Patient letters on RLS symptoms and remedies- Page 116

 

Kicking RLS/PLMD Patient



Sent: Tuesday, January 03, 2017 7:53 AM
Subject: RLS and iron absorption

I read through the website on various medications to treat RLS. I have had symptoms since my 20s and am now 72 with RLS problems every night. My doctor has prescribed Klonopin 0.25 dosage. I do take it after 2 or 3 days of miserable nights but find that taking it every night makes me listless and not clear thinking. A pharmacist friends says the drug is dangerous long-term and I should find a substitute. My doctor will not prescribe Ambien or Lyrica for sleep and she has not recommended Requip.

I am interested in the iron absorption issue. Does caffeine inhibit iron absorption in the brain? If so, how much? What about diet--is there anything to improve iron absorption in the brain?

Janice A., CT

Medical Reply

Coffee can inhibit the absorption of iron from the stomach and intestines by up to 40% (tea may reduce the absorption by up to 60%). Once in the blood stream, coffee has no additional effect on reducing the transport of iron from the blood into the brain.

Klonopin is one of my least favorite drugs for treating RLS. It does not really reduce RLS symptoms but rather works as a sleeping pill to put you to sleep. Thus it would work equally well for headaches, back pain or any other discomfort to help you sleep while not really addressing the actual problem. The issue is that Klonopin has over a 40 hour half-life which means that it takes the body a long time to get rid of the drug which is why you feel fuzzy the next day.

Ambien would be a better choice to treat the insomnia associated with RLS (if the RLS is not treated directly) as it has a half-life of only 2.5 hours. Tolerance/dependence/addiction can occur with all these sleeping pills but Klonopin is the most likely one to have these issues.

My first choice to treat RLS is no longer Requip (or its cousin, Mirapex). They do work extremely well initially but over time (months to years), they tend to make RLS worse (called RLS augmentation). A much better choice would be Lyrica, Horizant or gabapentin which help reduce RLS symptoms directly and also help in promoting sleep.


Sent: Thursday, January 12, 2017 4:49 AM
Subject: Neurologist not being very eh

I would just like to tell you that I went to see a neurologist on Friday the 6th of January about my RLS well, I was gob smacked. He told me that I could go up to 16mg (I am on the transdermal patch 2mg). He told me that he gave his patients who have Parkinson's disease 16/20MG.He has never heard of augmentation. When I told him I am not a Parkinson's patient he just shrugged his shoulder. I would just like your opinion.

Is he correct in saying I can take unto 16 mg? I suffer really bad with RLS, especially at night when I want to sleep. I think the last time I had a god nights sleep was...well I cannot remember.

Susan T.

Medical Reply

Your neurologist may be very good at treating Parkinsonís Disease but he clearly does not know much about RLS. The maximum FDA approved dose of Neupro is 3 mg for treating RLS. Augmentation becomes an issue at higher doses which is why we do not use those higher doses. RLS should not be treated with the same high doses of dopamine drugs as Parkinsonís Disease.

This is not just my opinion but that of my fellow experts. I have attached a medical article that several of us published recently which states very clearly the maximum doses of dopamine drugs (like Neupro) that should be used to treat RLS.

A Reply from Susan

Sent: Tuesday, May 02, 2017 11:17 AM
Subject: RLS

Have you ever heard of this Mucana Pruiens? I have been taking it for my RLS or should I say I was taking it up to about a month ago,I  found I was taking more & more to relieve my symptoms but it does work,the only trouble I found that I was taking more & more, when I first started taking it I was on 1/4 of a teaspoon twice a day, just before going to bed & then I was waking up at 2.0 o'clock in the morning my legs were going mad,b ut as soon as I took another glass the symptoms would go of, until the morning. you can only purchase this from California USA it was purchased through talking to a member of healthunlocked,she has spent thousands of USA $ trying to find something that would alleviate her symptoms, she's been taking it know for over 1year &she has had RLS for over 40yrs,she swears by it,but since I have been on it I found I was taking more & more. you can only purchase this from NUTRIVITASHOP.COM LIKE I SAID IN THE STATES. I was just wondering what's your thoughts about this herb.

PS: I stopped taking the M/P & went back on the patch, but find its not touching me at all 2mg,so last night I was so desperate for some sleep i took 1/2mg ropinirole made no difference at all, all it left me with was a banging big headache.

Susan T.

Medical Reply

I cannot say whether Mucana Pruiens has any benefit for RLS as it has not been studied properly so far. I always advise patients to beware of ďmiracle curesĒ for RLS especially when they have limited distribution. Many ďRLS treatmentsĒ that have no medical/scientific support work by the placebo effect (sugar pill). Even treatments like sleeping with soap in your sheets help many patients due to this placebo effect. Therefore, if no studies are available with a control group (that helps distinguish from placebo effects), then no claims can be made for a treatmentís effectiveness.

I do not doubt that you have decreased RLS symptoms with this new product but we cannot determine whether this is due to a placebo effect or a real direct drug action. Furthermore, we donít know the long term effects of taking this untested drug so I typically advise caution when using these products.


Sent: Sunday, January 15, 2017 8:15 PM
Subject: Heartburn with Mirapex?

For the past few months, I have had increasing heartburn to the point where sleep is difficult, or even more difficult than it was with just restless leg. I am taking .25 Mirapex at night in two doses, one at about 7 pm and one at 10 or just before I got to bed. i have been trying to correlate to any food that I have eaten and have not been able to. Is there a chance that the heartburn is related to the Mirapex?

I have tried PPIs and they have no effect. I have been on Mirapex for about 3 years and have had some bouts of heartburn during that time but nothing like this where I have to constantly burp to keep from getting unbearable burning. I have tried other medications with no effect either, like Carafate and digestive enzymes.

Kathy B.

Medical Reply

It is possible that the Mirapex is causing your heartburn but it would be more likely to be the cause of that problem if it occurred from the beginning of starting it 3 years ago. An easy way to figure this out would be to go off the Mirapex for about a week or 2 and see if the heartburn resolves. You could switch to an opioid (oxycodone, hydrocodone, etc.) for that week to control your RLS symptoms.

A Reply from Kathy

Sent: Sunday, January 15, 2017 9:23 PM
Subject: Re: heartburn

I really hate opioids, they make me throw up and completely stop up my system. My doctor has suggested that patch, Neupro, could that possibly help. There is no way I could not take the Mirapex for a week and survive to tell the tale.

Kathy B.

Medical Reply

You are already on a large dose of Mirapex (the maximum dose that is FDA approved is .5 mg/day but I recommend a lower daily maximum of .25 mg) and to replace that with Neupro may require at least 3 mg/day (the maximum FDA approved dose for RLS) or higher doses. Since Neupro is a dopamine agonist drug similar to Mirapex, it might cause the same problem. It might be worth a short trial since you canít tolerate opioids.


Sent: Monday, January 16, 2017 4:55 PM
Subject: Extra severe RLS

I am 54 year old woman who has had RLS for 15 plus years. I was first given Klonopin, then when that stopped working, I was given Mirapex, then ropinirole, I was on 2 mg ropinirole 4x a day for 2 years. Then I got thyroid cancer, and had RAI. Started having allergies to medicines. Anaphylaxis reactions. To antibiotics, cytomel, blood pressure medication etc. Then the ropinirole.

I have a neurologist that didn't seem to feel it was possible. The immunologists says it is and have to stop. Reactions to Mirapex and ropinirole, now starting to have symptoms with the Neupro patch. I am on 4 mg. It makes me wheeze. I have tried Xanax, gabapentin, the one that sounds like dopamine. None work even at high doses.

I feel like I am being thrown against a brick wall every 20 seconds. Doctors don't seem concerned. I haven't slept for more than 2 hrs a day for weeks now. I am exhausted. I can't live like this. Read here about iron, will get that checked. But has anyone heard of this severity? It's more like an electro shock, arms, legs, neck flexing/spasming.

Deana A.

Medical Reply

It is likely that you are experiencing augmentation (a worsening of RLS from being on a dopamine drug like the Neupro patch). People with augmentation typically experience very severe RLS symptoms just as you describe. The treatment is to get off the dopamine drug and switch to an opioid like oxycodone or methadone.


Sent: Saturday, January 21, 2017 6:19 AM
Subject: Using Horizant to get off Mirapex?

1). I do not tolerate opiates at all - is Ultram a viable option for the difficult period of stopping Mirapex?
2). If I continue with Mirapex, keeping the dose at .25 mg, is it basically Okay to include Horizant?
3.) In regards to Mirapex ER, it seems odd the regular formula is approved for RLS yet ER is not. I am currently receiving chemo therapy and wonder if a more continuous dose of medication would be beneficial.

Tina C.

Medical Reply

1. Ultram will help somewhat but not nearly as well as true opioids.
2. We often combine Horizant or Lyrica with Mirapex to help keep the Mirapex dose as low as possible so that is fine.
3. Mirapex ER is considered a new drug and the drug company (BI) had to do further studies to get it FDA approved for PD. They chose not to do the studies for RLS.


Sent: Saturday, January 21, 2017 3:19 PM
Subject: RLS

If a person has RLS type of symptoms that is the urge to move sensations in other body parts such as hands /arms but not in the legs and never had them in the legs (not on any meds ) can this be classed as RLS? This is a question from a member of a UK support group.

Kim W.

Medical Reply

For symptoms in parts other than the legs, symptoms must have been present first in the legs. The leg symptoms can become minimal and the other arm/body symptoms worse, but the other body symptoms must be preceded by leg symptoms sometime in the past.


Sent: Sunday, January 22, 2017 6:13 AM
Subject: RLS / PLMD question

I stumbled across this question and answer board on-line and I have a question about the possibility of treating nighttime PLMD with marijuana.
I'm a 55yo woman, and have had some RLS symptoms for many years, but not bad enough to treat. Lately I was diagnosed with mild sleep apnea and use CPAP therapy, but still feel very tired during the day.

My doctor. believes I have PLMD and wants to treat with Requip (.25). I'm reading that this is the standard treatment, but I am afraid to take yet another pill (already take Synthroid, atenolol, Lipitor, Zyrtec, Magnesium, Vit D, Slo-Niacin, CoQ10). I'm wondering about using marijuana, or a medical derivative, at bedtime - would this work? With the laws changing and medical marijuana being legal in many places, this possible treatment interests me.

Mary B.
Maryland, US

Medical Reply

Marijuana does help RLS symptoms. It works quickly (within 5-10 minutes typically) but lasts for only 1-2 hours. However, it usually must be inhaled and it is hard to recommend an inhaled product that may do damage to your lungs. Whether it helps PLMD is completely not known.

Furthermore, most experts do not recommend treating PLM except for unusual circumstances. You are most likely much better off not adding any additional treatment as long as your RLS symptoms are not too disruptive.


Sent: Tuesday, January 24, 2017 3:50 PM
Subject: RLS and natural treatments?

Hello to you .I have had RLS at night for a long time on and off, but it has now become a permanent resident with me every night, it is really like a monster in my life!

Have you any natural help that you could suggest for me?

Hazel R.

Medical Reply

There are not a lot of very good "natural" treatments. However, they include getting proper sleep, avoiding alcohol and the very many drugs that worsen RLS (see our website and medical alert card for more details), and make sure that your iron levels (as measured by serum ferritin) are adequate.

Otherwise, you should consider medication which should be able to bring you excellent relief.


Sent: Sunday, January 29, 2017 7:54 AM
Subject: Just realized I have RLS

Iím 56, and though basically in good health, I recently began having symptoms of RLS in my right leg. I didnít know this condition existed, and I will schedule an appointment to see my chiropractor this week (I see some information about possible lower back compression on a nerveÖI had a cervical spine fusion and two discs replaced in 2008). If adjustments donít help, Iíll schedule an appointment with my family doctor. I had a bunion/bone spur removal on my right foot Nov. 7.

I donít remember having issues before the surgery, but as it has gotten progressively worse rapidly, it is possible I just donít remember because it started out mild. I have seen some posts on your site (havenít read them all, but plan to) that talk about this condition occurring after trauma/surgery, but I did ask my orthopedic surgeon at my last post-op about it, wondering if it could be related, and was told he had not heard of any correlation to RLS after bunion surgery. I do also use Rx Estrace cream once-twice per week.

I overall do not want to take medications, but since I realized what was happening actually had a name/diagnosis, (I Googled leg feels the need to move when resting and discovered RLS) , I then Googled natural remedies and saw iron or potassium deficiencies could be the cause. I eat a lot of dark greens like kale, spinach, arugula, beet greens, etc., but donít usually eat red meat, so thought maybe taking a multi vitamin would help. Just started with Centrum Silver, plus drinking orange juice and eating more bananas. No improvement.

I ordered Restful Legs on Amazon, a natural aid with mixed reviews. No improvement. I donít belong to a gym, and itís winter so Iím not casually riding my beach cruiser bike around, so itís possible I need to add an hour of exercise to my day via an exercise DVD. I have had to leave our bedroom to allow my husband to sleep while I move around my leg and get up and run in place and do stretches. I need my 8 hours of sleep to function, and Iím getting about 5 hours. This is such a bizarre syndrome.

Any suggestions on natural healing would be appreciated, though in this case I would be willing to try a gentle, non-addictive medicine so I can relax in the evenings again. I remember relaxing used to be such a cozy thing to do, but itís a rare moment that RLS doesnít ruin it. Itís not just at nighttime, either. Iím on my feet most of the day as a ceramics studio manager, teaching but also doing various chores and tasks, lifting heavy kiln shelves loading and unloading the kiln, but when I sit, even now writing this on my computer, the sensation to move my right leg is happening.

Nancy B.

Medical Reply

There is likely little or nothing that your chiropractor can do to help your RLS. There are really few natural therapies that help RLS. You should have your serum ferritin levels checked and if not over 50-75, oral iron supplementation may be helpful.

There are several medications that can help relieve RLS symptoms. I would suggest starting with an alpha-2-delta drug (Horizant, gabapentin or Lyrica) which are definitely not addictive. These drugs may also help you sleep better and longer.

Surgery may have triggered your RLS, but there is nothing that needs/can be done now about what may have caused the RLS to be active.


Sent: Monday, January 30, 2017 1:28 PM
Subject: Maine law just forbade my methadone for RLS... Ideas?

Maine recently passed a law severely restricting all opioids. I assumed my physician would seek an exemption, but I was wrong. He was unaware of the law, and says he will taper methadone and put me on one of the many other meds that failed to help me in the past (those failures are why I qualified for methadone several years ago). I hope to find another physician, to whom I can put forth my case for an exemption.

Do you have any idea how Maine's exemption process works? There's an exemption for "palliative care" and a separate one for "hospice/end of life" care. I should think I'd qualify under the palliative rubric ("Palliative care" means patient-centered and family-focused medical care that optimizes quality of life by anticipating, preventing and treating suffering caused by a medical illness or a physical injury or condition that substantially affects a patient's quality of life, including, but not limited to, addressing physical, emotional, social and spiritual needs; facilitating patient autonomy and choice of care; providing access to information; discussing the patient's goals for treatment and treatment options, including, when appropriate, hospice care; and managing pain and symptoms comprehensively. [22 MRSA ß1726(1)(A): 2015, c. 203, ß2 (NEW).])

Methadone worked perfectly (10 mg morning, 20 mg at night). All previous medications had disabling side effects. I was unable to focus and concentrate, and had to walk with a cane and avoid stairs due to dizziness. I'm about to turn 70. I hope to be able to live fully until I die, and not be either confined to dozing in a chair or experiencing my entire body jerking every 5 to 8 seconds!

Sharon S.

Medical Reply

The new Maine opioid law is quite limiting but it does have some escape clauses for cases such as yours. The physician has to have taken 3 hours of extra CME (Continuing Medical Education) in order to prescribe opioids.

To prescribe your methadone, the physician would have to write ďmedically necessaryĒ for the high dose of methadone (which may exceed the upper limit depending upon which opioid conversion calculator they are using) on the prescription and that should take care of it. This exemption applies to chronic pain patients and it is very valid to have the physician state that he is treating chronic RLS pain.

There may be changes in the rules as of January 2017 but they are not yet easy to find on sites such as the Maine Medical Association website.

Several of us experts in the USA are currently working on a medical article supporting the correct use of opioids for treating RLS which should be quite helpful for physicians treating patients like you.


Sent: Tuesday, January 31, 2017 1:59 AM
Subject: RLS sufferer

Hello Doctor, how are you? I'm a 76 year old female. I've been struggling w/ RLS for over 10 years now. I have been taking requip since my diagnosis in 2006, but developed augmentation. By last year, I was on 7mg of Requip a day.

I finally saw a neurologist who decided to help me get off Requip. She introduced Gabapentin to my regimen and in the past three months, I've been able to go down from 7mg of Requip to 4. She also suspects I MAY have Parkinson's, and therefore prescribed me Sinemet along with the two other medications.

While I'm sleeping better than I have in years, I often feel confused, have noticed some memory loss, and my family is telling me I'm exhibiting signs of "mental agitation." Is this typical with the above combination of three meds? And do you think that Gabapentin will one day be able to replace Requip entirely? I'd like to eventually take as little medication as possible!

Lisa T.

Medical Reply
 

It is difficult to give you a complete answer since it is not clear whether you have Parkinsonís disease. We tend to see less problems with RLS augmentation in Parkinsonís disease patients even when they are on Sinemet (which causes the most amount of augmentation).

If you do not have PD, then adding Sinemet is a very bad idea since it will worsen the augmentation problem markedly sooner or later.

The best treatment for augmentation, is to get off all dopamine drugs completely. As you have already found out, gabapentin is only partially helpful. Typically, opioids are needed to get completely off the dopamine drugs. It is also likely that the gabapentin is causing your confusion and memory loss as it can be a very sedating drug.


Sent: Tuesday, January 31, 2017 6:49 AM
Subject: Do I have RLS?

 I'm 46 years old. I'm not sure is I have RLS and that's why I'm writing you. I never seemed to have a problem with my legs until I went on a no carb diet for 4 months now and lost over 60 pounds. I currently weight 199 pounds and am 5 foot 10. My legs feel like there's bugs or snakes in my calves. Usually only in the morning hours. It scares me and drives nuts. Not so much at night. Morning is terrible.

I don't even want to get out of bed, knowing what I'm in for. It doesn't hurt, just weird feeling of something crawling inside my calves. I've read about RLS and it says its a night time thing, not morning. So I'm confused. Should I see a doctor?

Tammy A.

Medical Reply

Although the typical presentation of RLS is in the evening/bedtime (and in fact, that is one of the diagnostic criteria), I have seen a few cases of RLS presenting initially in the morning.

If those strange sensations of bugs and snakes crawling in your legs occur at rest and are associated with an almost irresistible urge to move, and you get significant improvement when moving (like walking), then you most likely have RLS.

If you your symptoms are disruptive and bothersome, then you should consider medication and see your doctor or one that is familiar with treating RLS.


Sent: Friday, February 03, 2017 5:06 AM
Subject: Quad pain

I have been diagnosed and treated for RLS with Requip for about 2 years, yet a neurologist told me it wasn't RLS but it was cause from my back problems. I go to a pain clinic & even though the Requip was helping (4 mg broke in half and taken early then later. It helped but I was nauseous. The first doc at the club mic had put me on this medication but my present doctor cut my ropinirole down to 2 mg only and said that was all that could be given.

Well, it doesn't help all night. I wake after (at the most) 2 hours unable to go to sleep and horrible pain in my quads only. I do have jerks with it. I can't do anything or go anywhere. Had to quit church because when I sit... it happens. I don't know what to do. I already take hydro code for RA. I've had RA since I've been 27 & had both knees replaced and scheduled for hip replacement . I'm at my wits end. I can't sleep. It hurts so I cry & use a rolling pin over my quads. It's like the muscles are contracting and it is so painful.

Dede M.

Medical Reply

Your response to Requip make it very likely that you have RLS (since Requip will not help any other discomfort except for RLS).

Higher levels of Requip (like 4 mg) tends to cause augmentation (a worsening of RLS with time from taking a dopamine agonist like Requip) over time so keeping the dose low is a good idea. However, it is quite likely that you already are experiencing RLS so a different strategy is necessary. You current doctors and neurologist probably have no idea how to treat this problem (which is very treatable by an RLS expert).

Attached is a recent article that several of us experts have published recently discussing the treatment of this problem.


Sent: Sunday, February 05, 2017 3:42 AM
Subject: Ferritin levels for RLS?

I no I wrote to you some weeks ago but my GP has said that my ferritin level is to low & needs to be higher at the momemt it is 92mcg/L but my GP as said it has to be 200mcg/L. I have disagreed with him but, (I know this is asking to much) do you think you could send me proof that 92mcg/L is not too low.

Susan T.

Medical Reply

There are a couple of articles that show that with oral iron supplementation that ferritin levels of greater than 50 mcg/L or more currently greater than 75 mcg/L provide help for many RLS patients. The upper limit was not well defined.

We have more recently found that driving the ferritin level much higher (typically over 200 mcg/L with intravenous iron, so your doctor may be correct) has a much more profound effect on RLS symptoms. That is my goal when I transfuse a patient with intravenous iron. It is very hard to get serum ferritin above 75 mcg/L with oral iron which is why we resort to intravenous iron therapy if we really want to increase serum ferritin levels adequately to control RLS symptoms.


Sent: Monday, January 2, 2017 7:08 AM
Subject: Ropinirole vs pramipexole

I recently switched from pramipexole to Ropinirole. I did this because my insurance considers Ropinirole a tear 2 drug while pramipexole is considered a tear 3 drug and costs a lot more. The pramipexole dosage was . 5 mg and seemed to work. The Ropinirole dosage was 4 mg. the Ropinirole worked for about 5 days. On the 6th day it worked but I woke up 2 hours after taking it with twitching legs. After 2 hours of suffering I took a pramipexole tablet.
Was able to sleep after about two hours.

Should I give up on Ropinirole or give it more time. It is very difficult to function when sleep deprived?

David K.

Medical Reply

The issue with your change from pramipexole to ropinirole is that the ropinirole does not work as long as pramipexole. Furthermore, although the change in dosage is reasonable, some patients do not find ropinirole to be effective even at 8 times the dose of pramipexole.

It is hard to understand why your insurance would put a generic drug like pramipexole to tier 3 (it is typically very cheap even if you pay cash and I would suggest that you check out the cash price). Furthermore, since the ropinirole is not working well for you, you should request that your physician ask for an insurance exception for the pramipexole so that the cost may come down.


Sent: Wednesday, February 15, 2017 6:03 PM
Subject: RLS and ferritin levels?

What is your recommendation for minimum serum ferritin levels for a RLS sufferer? I see varying reports ranging between 50 and a hundred

Kim W.
UK

Medical Reply

Our general recommendations about iron are based on only a few studies. We know from those studies that increasing the ferritin levels above the 50 (first study) to 75 (second study) range often (but not always) helps RLS symptoms. However, it is often very difficult to increase the serum ferritin by oral iron (due to issues like poor absorption, constipation, stomach upset, etc.).

When giving intravenous iron infusion, I have found that some patients donít improve their RLS symptoms until they are above serum ferritin levels of over 130 (and they worsen below those levels). We still have a lot to learn regarding optimal serum ferritin and iron levels. The issue is likely how much iron we can push into the brain (which may vary considerably) and the only way to be sure would be to do a spinal tap (which is not likely going to happen for most of us).

A Reply from Kim

Sent: Wednesday, March 29, 2017 3:28 PM
Subject: RLS
 
I have been doing very well on 1mg Neupro patch for 5 years. It isn't working so well recently (no daytime symptom) but a few bad nights. I am considering moving up to 2mg. However if I have augmentation I know that is not advisable.

How can I tell if it is augmentation or simply tolerance?

Kim W.

Medical Reply

That is a difficult question since the Neupro is working around the clock and could be masking the earlier onset of symptoms that is typical of augmentation. In addition, your RLS may have worsened over the past 5 years (natural slow progression of RLS), other drugs can worsen RLS, lower iron/ferritin levels, stress, other medical conditions (such as back pain) can also complicate the issue. As you can see, there are many variables that confound a simple answer to your question.


Sent: Saturday, March 11, 2017 8:48 PM
Subject: Severe RLS

You very kindly replied to an email I sent in August 2016 about augmentation on Ropinirole. I have Multiple Sclerosis (diagnosed 1994) and severe RLS. I went through withdrawal from ropinirole with the help and advice from people on the RLS UK website and with email advice from you.

My doctor prescribed gabapentin 900mg, 300mg at 7p.m and 600mg at 9pm which worked quite well for about 3 months and then seemed to lose effectiveness. Adding codeine helped for a while but that also lost effectiveness. I am now on OxyContin 10mg taken twice a day but, although it calms my RLS, I still wake up every hour during the night with ďtwingesĒ and I am experiencing panic attacks and feelings of dread which I have never had before. It is a really horrible experience and I have started to have very, very negative feelings which worry me immensely. As I have now tried almost all available drugs for severe RLS, where do I go from here? Is morphine extended release a better option for negative mood and anxiety? As I have suffered severe augmentation on ropinirole I am extremely reluctant to go back on dopamine agonists.

Any advice you could offer on dealing with the side effects of negative mood and anxiety and managing to get more than one hourís sleep at a time would be greatly appreciated.

Julie G.

Medical Reply

Both the gabapentin and opioids can cause depression. However, anxiety is usually improved with gabapentin (although anything is possible). Since most of your symptoms began after starting OxyContin, it is of course very likely that your new symptoms are due to this drug. It can sometimes be helpful to try other opioids (such as morphine sulfate and others) and you may or may not experience the same side effects.

It may also be helpful to consider a change from gabapentin to the more reliable (more predictably absorbed) drug, Lyrica.

A Reply from Julie

Sent: Wednesday, May 03, 2017 8:35 PM
Subject: OxyContin effective dose

I am currently taking 10mg of OxyContin twice a day and 75mg of pregabalin in the evening. The OxyContin does dampen down my RLS during the day ( I rarely notice it), but I am still struggling during the night. I am managing about 3 hours sleep between 11 in the evening and 6 the next morning, but never more than 1.5 hours at a time, as the RLS stops me sleeping. I take the pregabalin to counteract OxyContin induced panic attacks and in the hope of achieving a sedating effect.

The neurologist I recently saw here in the UK seems to think 4 or 5 hours disturbed sleep is normal for RLS sufferers and I should not hope for more. I know some people manage at least 6 hours uninterrupted sleep so I am wondering whether an increase in the dose of OxyContin to 15mg twice a day would achieve this.

Should I ask for an increase in the dose to see whether I could obtain more sleep in the evening?

Julie G.

Medical Reply

The goal for every RLS patient should be to get adequate sleep which is typically 7-8 or more hours of sleep. Any neurologist accepting lower standards for RLS patients simply indicates a lack of complete knowledge (which is very common, unfortunately in the UK and elsewhere) on how to properly treat RLS.

You have several options. The first would be to increase the evening dose of pregabalin slowly (perhaps by 75 mg every week or so) until you reach an effective dose that helps control your RLS symptoms (pregabalin can be an excellent treatment for RLS at higher doses) and/or the drug adds further sedation to help you sleep.

If that does not work very well, then increasing the evening dose of OxyContin ONLY should be considered. It would likely resolve your RLS and enable you to get an adequate night of sleep. I would not settle for less than 7-8 hours of sleep which should be achievable with proper therapy.


Sent: Monday, March 13, 2017 8:05 PM
Subject: Ferritin level low

I just found out that my ferritin level 14, my RBC 4.13 are below normal ranges. But my serum iron, iron binding capacity and HGB are all within normal ranges. My symptoms of RLS worsens in the past half year. Is the ferritin the only determining factor for the worsening symptoms of RLS? My doctor is totally ignorant about the relationship between ferritin level and RLS. Do you think I need the iron infusion to bring the ferritin up to normal or the oral supplementation of iron will be sufficient to correct the level.

Zu W.

Medical Reply

A low ferritin is often associated with worsening of RLS symptoms but not always. The serum ferritin is more sensitive than the serum iron and hemoglobin levels which is why we use it as a marker.

We typically try oral iron first (with a goal of getting the serum ferritin level above 75). That does not always help (many people have trouble absorbing enough iron when taken orally or get constipation or stomach upset) so we then consider intravenous iron supplementation (which usually helps about 60% of patients). Currently we recommend using only INFeD or Injectafer for intravenous iron infusions.

A Reply from Zu

Sent: Thursday, March 23, 2017 12:28 PM
Subject: Dopamine receptor reset

I have been on Mirapex for three months for my RLS. I tapered it off now for fear of augmentation because I had it years ago. I am on Neurontin 1800 mg now without effect. My question for you is how long to take to reset the dopamine receptor once you've been on dopamine agonist for a while.

Zu W.

Medical Reply

The dopamine receptors may "reset" and become much more sensitive to dopamine drugs like Mirapex within a few weeks. However, once you have experienced augmentation, it will likely recur fairly quickly once you restart the Mirapex. It could take a few weeks or months but it does depend upon the dose. If you go back on a much lower dose than previously, then augmentation may not occur for as long as years.

The other issue is that most people don't absorb gabapentin very well especially with higher doses (greater than 300 mg). That is why Horizant was developed (it delivers a high percentage of the gabapentin you take in regardless of dose). In addition, Lyrica is also well absorbed and is another alternative to regular gabapentin.


Sent: Thursday, March 16, 2017 6:45 PM
Subject: PMS?

 Have you ever heard of increased RLS symptoms during the period before a woman's menstrual cycle? I'm a healthy and active 39 year old. Both my sister and I have what we assume is RLS. And both of us have noticed our legs get worse in the few days our cycle is about to start. Lasting until the 1st day of my cycle. It's almost unbearable.

I have already sought help from a primary care doctor and she prescribed me Mirapex which makes me so drowsy I can not take it during the day. So I guess my questions are: does/can PMS make RLS worse? Are there any non drowsy medications for daytime pain? Thank you for your time,

Lyssa
California

Medical Reply

I am not sure if I have already answered this question on our website but it is a fairly common problem and question.

Female hormones may have a significant effect on RLS. Many women complain about increased symptoms during the 7-10 days that PMS typically occur. In addition, adding or stopping female hormones have been found to affect RLS symptoms (sometimes for better or worse). In addition, the worsening of RLS during pregnancy may also be due to a change in hormones.

Neupro (a long acting dopamine agonist) may have less of a propensity to cause drowsiness but only trial and error can really determine what happens with you. The other gabapentin like drugs often cause drowsiness (you may still want to consider them). Opioids make a small percentage of RLS patients sleepy but most do quite well with that class of medication.


Sent: Tuesday, March 28, 2017 10:33 AM
Subject: Insomnia and RLS

I live in Colorado. I have written to you several times about my severe insomnia and RLS.

I used to take Trazodone for sleep and it worked very well. But when I got RLS 18 years ago, it made my legs much worse, so I stopped taking it. I have not slept well since, for the most part.

I decided to try Trazodone again, and am still taking Xanax, as I am hooked on it. I started with 25 mg. of Trazodone and got up to 125 mg, with only 1/2 mg of Xanax, also Mirapex for my legs. Constipation got to be very bad, so I had to stop the Trazodone and start over. But now I have things that hopefully will take care of that.

If I can get off the Xanax and just use Trazodone and Mirapex, do you see any problem with that? Also, I thought I should do this slowly (upping the Trazodone. and lowering the Xanax). Or would it be safe to just take 250 mg Trazodone. and no Xanax, all at once?

Irene O.

Medical Reply

There is no set way to transition from a combination of trazodone and Xanax to trazodone alone. The issue with higher doses of trazodone (doses over 50-100 mg/day) is that the side effect profile quickly increases. That includes your constipation problem but also next day/morning sedation is much more likely. You may find it very hard to get off the Xanax with reasonable doses of trazodone.


Sent: Monday, March 27, 2017 3:47 PM
Subject: dopamine agonist question

Can you please tell me if there is any way to manage Requip so as to stay on it? Is a drug holiday one way to do that? What do you recommend about drug holidays, and when augmentation occurs, is it too late to correct the problem with a drug holiday?

Also, I had a bad withdrawal problem after stopping Mirapex. The problem did not go away after 7 or 8 months, and I finally got better after getting back on Requip. Now on Requip for 9 months, and it is beginning to augment (at dose .75). This is the second time on Requip. Do you have any information on dopamine agonist medicines and why withdrawal occurs? Do you think I can expect the same problem if I stop Requip?

I consider myself unable to take the gabapentin-family medicines because of brain fog. I finally found a doctor willing to prescribe Methadone, and I have it, but I have never tried taking it. What can you recommend?

Jeanne W.

Medical Reply

Once augmentation occurs with one short acting dopamine agonist, it will almost always occur when starting another one (in your case, restarting Requip). Once augmentation has occurred (and most often even if it has not occurred), stopping a dopamine agonist causes severe withdrawal RLS symptoms for 10-14 days. After that time period, the RLS will calm down to previous levels (but still be active if not treated with another medication (such as methadone in your case). We typically start the methadone as soon as the dopamine agonist drug is stopped to ease the discomfort of the worsened RLS symptoms.

Some patients can take drug holidays/rotate the dopamine agonists with other medications (such as gabapentin meds or opioids). This rotation can be done every few days to months (depending upon how long it takes until the dopamine agonist causes augmentation). However, it is most often easier to just take a small dose of opioid daily (unless the opioid causes side effects that require a rotation.


Sent: Monday, April 03, 2017 11:38 PM
Subject: Re: RLS help please

My new doctor recently took me off of tramadol and OxyContin. I was using the Tramadol for awake hours (took 2 before dinner to keep after dinner sleepiness and therefore RLS symptoms at bay, also took 2 in the middle of my shift (I work night shift) for the same reason). I then took 1 20mg OxyContin 2 hrs before going to sleep (either in the morning or at night depending on if I worked or was off). Now he has me taking 1 5mg Methadone once a day (states it'll cover me for the full 24 hours).

It doesn't seem to help a whole lot, I still have plenty of breakthrough, and certainly doesn't cover me for the whole 24 hours. Would you recommend a higher dose and if so how often should I be taking it. I need 24 hour coverage as my RLS kicks in whenever I'm resting or get sleepy. I'd like to be able to take your suggestions to him. Thank you again for your guidance.

Julie S.

Medical Reply

Typically, methadone provides about 8-10 hours of RLS relief although this can vary considerably in some patients (shorter or longer depending upon how fast/slow they metabolize the drug). You can discuss this information with your doctor to help provide more complete relief of your RLS symptoms.


Sent: Saturday, April 8, 2017 10:38 AM
Subject: Ice cream anecdote

I love ice cream but had to give it up because of the PLMD/RLS. Then reading about the possible connection of mono-diglycerides I searched for natural ice cream made without this emulsifier. Ate a pint yesterday and no RLS/PLMD!! Of course, eating that much ice cream isn't good for a regular diet plan, but I do plan to enjoy ice cream monthly. Seek out healthier stores for natural brand ice creams.

Mara M.

Medical Reply

Although it is very common for RLS patients to worsen with ice cream, the reason for this is completely unknown. It certainly could be due to the emulsifiers (such as the mono-diglycerides) but we donít have any concrete evidence for this.

The ĎnaturalĒ ice cream could have other factors that prevent the RLS from worsening. Let us know if you continue to do well with the purer ice cream products and if regular ice cream continues to trigger your RLS.


Sent: Friday, April 21, 2017 8:20 AM
Subject: Severe burning and sweating sensations

I am 62 and have had restless leg for 20 years beginning with the onset of menopause at 42. I have tried the usual medications of Klonopin, Sinemet, Gabapentin, and Requip for a number of years until augmentation with that. I started generic Percocet 10/325 X 5 daily and maintained that dose for 10 years. 4 years ago Valium was added in for insomnia.

I began profuse sweating from my head and neck 2 years ago. I was referred to a specialist at a teaching hospital here in Seattle. I was excited and thought I would get the help I needed as the profuse sweating was now effecting my job and daily living. I went off both the Percocet and Valium quite quickly in retrospect, and started Methadone 10 mg. I started to have intense burning/ pins and needle type pain and the sweating was worse. I was nauseous and vomiting for 5 months.

The doctors did not know why this was happening. I was put back on a lower dose of Percocet at 35 mg per day and stopped the Methadone. I am no longer vomiting but continue to have the awful sweating and burning pain. I can no longer work and the nerve pain is all day. It is the same pain I had in my legs but is now worse and seems to be in my torso area too.

I saw 3 residents while at Harborview Medical Center here in Seattle. They did not know what to do or why it was happening. They then decided it was the Percocet and sent me to a Pain Doctor. Excited again to get this under control... The pain specialist said " I am not sure why you are here because I do not treat restless leg syndrome"

I now feel I am in a nightmare with doctors and am being made to feel like I am a drug seeker for being on Percocet. The Percocet only works for a short time and then my legs and pain gets worse. I sleep only 2 hours a night, but feel very awake. I don't think I am wrong to want help for this. I am feeling hopeless and would like your help .

My primary care doctor has done all the usual blood work, plus a CT and MRI for MS. I feel it is the obvious... A problem with medication and worsening restless leg. Please let me know how you think I should manage this for the next several years.

Marcia P. in Seattle. Sleepless and frustrated!

Medical Reply

Nausea and vomiting is a known side effect from opioids so it is reasonable that this side effect is likely linked to taking methadone. Sweating is a much more unusual side effect of opioids but of course, anything is possible. It might be worthwhile to go off all opioids (Percocet) and just use Mirapex or Requip for a week or so to see if the sweating goes away. Once it is confirmed that opioids are the issue, then this problem can be more directly addressed.

Percocet typically lasts for about 4-6 hours so it is fairly expected that it will not cover your RLS symptoms for very long. Furthermore, the acetaminophen part of Percocet does not help RLS symptoms so it should not be used for RLS (the pure opioid part of Percocet is oxycodone which is a better choice if an opioid is necessary).

A Reply from Marcia

Sent: Monday, April 24, 2017 7:09 AM
Subject: Re: Severe burning and sweating sensations

Thank you for your quick response and insight. I did try just Oxycodone for the past several months and had the same burning pins and needles and sweating while on it also. The difference between them is I felt the Percocet seems a little more relaxing and the Oxycodone made me feel quite anxious and awake.

It's a pretty subtle difference. But grabbing at straws since it worked in the past. You suggested Mirapex or Requip. I had chest pains with Mirapex. I had taken Requip in the past for a few years until augmentation became a problem. Requip was tried again prior to the opioid( Percocet and Oxycodone) and the augmentation was an immediate problem again.

Do you think a different opioid would help? When listening to Information from the Mayo Clinic there are chemical differences between them. Others have mentioned some other Parkinson's or MS medications but I have not heard much about them.

A year of this burning and sweating is too much. I just can't function.

Marcia P.

Medical Reply

There really should be no difference between similar doses of Percocet and oxycodone (you might have been on slightly different doses which could account for the difference). However, anything is possible.

Different opioids do have slightly different properties and sometimes I have to go through several before finding one that both works and is tolerable.

MS medications have no role for treating RLS. Once you have had so much problems with Requip and Mirapex, I would suggest that staying away from other Parkinson's medication might be a good idea.


Sent: Monday, April 24, 2017 6:25 AM
Subject: Restless Leg Syndrome

I have been taking Mirapex 0.25 three times a day for three years, and recently began augmentation. I stop Mirapex cold turkey six days ago, as my Neurologist said there would be no problems. So now I am taking gabapentin 100 three times a day. Now my Restless legs are worse, and legs are jumping at night.

I was just wondering how long does it take to withdraw from Mirapex, and if that is what is causing my worsening condition. Honestly, after lots of research I think I know more than my doctor.

James M.

Medical Reply

Unfortunately, you likely already do know more than your neurologist. Stopping Mirapex (especially once augmentation occurs) causes a severe worsening of RLS symptoms. This typically lasts for about 10 days after which the RLS symptoms start to calm down (often quite dramatically decreasing). At that time it may be much easier to control the RLS symptoms.

Gabapentin is often not well absorbed so your present dose might not be helping you very much. Better alternatives for treating RLS (in the gabapentin class of drugs) include Horizant (this drug is actually approved for treating RLS) or Lyrica (not FDA approved for RLS but works very well).

A Reply from James

Sent: Tuesday, April 25, 2017 3:04 AM
Subject: Re: Restless Leg Syndrome

Thanks very much for your quick response. I am going to make an appointment with my Primary Care Physician, and go over things with her. Seventh day without Mirapex, and wondering if I should discontinue Gabapentin for 'ten day washout', or just switch over to Lyrica, and what dose Lyrica? Eventually I guess I will take Horizant if budget allows.

James M.

Medical Reply

Since you have already suffered for 7 days, it may be worth going a few days until your RLS calms down. There is no reason to stop gabapentin right now and changing to another drug like Lyrica as things are changing may make it more confusing (you might not know how effective it is or what is causing side effects). You might want to discuss a higher dose of gabapentin (like working up to 300-600 mg for your evening dose (1-3 hours before bedtime) to improve your sleep.


Sent: Thursday, April 27, 2017 12:00 PM
Subject: Need Help for RLS

I was taking Ropinirole 3 mg up to 4 times a day for years. It wasnít effective anymore, so my doctor prescribed Pramipexole 1 mg (1 at night and 1 during the day if needed) for my RLS. During the first few weeks I was happy with it. Iíve only been on it a couple months. Could I have augmentation already? I hesitate to take it at night now because it seems to trigger an RLS attack. Last night my legs were relaxed at the time I took my night-time dose. Within a half hour I had a severe attack, first in one leg, then in both. I spent hours trying to get comfortable and finally fell asleep.

Iíve noticed that after I take the medicine, my RLS symptoms continue for 2-3 hours. It seems thatís a ridiculously long time for the Pramipexole to take effect. I have some leftover Ropinirole which I take sometimes out of desperation for relief! My doctor advised me to not take both medications Ė however, I feel desperate for relief and nothing I have is helping.

My insurance will cover Lyrica at a $30 copay which is not in my budget. However, I can take generic Depakote, which I took several years ago and noticed a great reduction of RLS symptoms.

Joyce B.

Medical Reply

Unfortunately, when we started prescribing Mirapex and Requip 10-20 years ago, we did not realize the problems that would occur down the road. Once you get augmentation with one dopamine agonist like Requip, we now strongly recommend that you do not switch to another one (like Mirapex).

What typically needs to be done in this situation with augmentation is to stop all the dopamine agonists. After 10 days off the drugs, the RLS will get better but it is very difficult to get through that period. Lyrica would not help much and likely Depakote would most likely not help adequately also. We use opioids like oxycodone/methadone and that takes someone who is more expert (like me) as most doctors have no idea on how to use it and donít like prescribing opioids. With proper care, this transition should be quite comfortable.


Sent: Friday, April 28, 2017 9:23 AM
Subject: Gabapentin and oxycodone


I am 74 years old with refractory RLS. Treatment for symptoms is 10 mg oxycodone 4 times per day. RLS is controlled but have great difficulty falling asleep. I recently found a study by Doctor Early at Johns Hopkins concerning high glutamate levels in RLS patients which keep the brain "racing" after laying down at night thus making sleep impossible or nearly so. This is my sensation exactly, and I asked my doctor if I could try gabapentin to reduce the glutamate levels to enhance sleep. It works but simultaneously causes RLS symptoms to reappear as if the oxycodone effect upon RLS is being compromised.

I live in Northern Michigan and up here RLS is not something that is understood very well. Hope you might have some comments which might help me.

Steve C.

Medical Reply

Gabapentin is one of the drugs that is used to treat RLS so it is quite curious that it is worsening your RLS symptoms. You might want to try Lyrica instead (discuss this with your doctor) as it also lowers glutamate levels but may help rather than hinder your RLS symptoms.


Sent: Wednesday, May 03, 2017 5:50 AM
Subject: Restless Legs Syndrome and Fibromyalgia

I just Ďdiscoveredí your feed regarding RLS today, and I hope so much that this Web is still active, since I need information I could not find on your posted feeds.

About 6 years ago, I presented with chronic tiredness, headaches and body pains so extreme that I could not sleep and was diagnosed with Fibromyalgia. Cymgen (Cymbalta) 60mg was prescribed and I received the odd cortisone and booster of vitamins injection when it was bad. This helped quite a lot, with the quantity of extreme pain episodes not so frequent anymore. After 2 years however, symptoms worsened again, and the dose was up with another 30mg, which relieved the FM symptoms, but over time I experienced visual disturbances and EXTREME brain fog, which forced me to go back to 60mg again. Sight was repaired, but fogginess remained.

About 3 years after I started the treatment for FM, my husband made me aware of the fact that I had some or other fight each night in my sleep, because I would kick and twitch and move for hours on end. Funny thing, I was not aware of these Ďepisodesí each night, for me it felt as if I was sound asleep. I did however started to feel more and more tired and eventually had a sleep test with electrodes connected to my brain which asserted that I indeed was moving, but not only for short periods Ė for basically the whole evening, thus never getting good quality rest. PLMS was diagnosed and Oxpola (Mirapex/pramipexole) 0.5mg was prescribed, which had to be increased after about one yearís use to 0.125mg. Thing is, after I started the Oxpola, I became VERY aware of pain/heaviness/twitching/uncomfortable feeling/crawly in my legs and the desire to move them. I could not even take an afternoon nap anymore, because symptoms presented then as well!

About 14 days ago I saw a neurologist (for worsened brain fog and forgetfulness), who did a MRI (which was perfect) and a conduction test (which found that the restless legs is caused by my back and not my brain). He prescribed Lyrica 0.75mg twice a day, starting with a dosage of 25mg twice a day and said that I can stop using the Oxpola, which almost drove me crazy, after which he lessened the Oxpola to 0.5mg per day for 10 days, which worked very well, but since I took the last Oxpola I am experiencing the worst withdrawal symptoms! For the past 4 nights (after I stopped using Oxpola),I could not sleep due to pain and spontaneous (I have no control over it) twisting and turning like a mad person! At the moment I am sooooo tired and my brain is soooo foggy! And I even have the crazy legs during the day as well. The neurologist suggested that I can use the Oxpola with the Lyrica, but due to brain fog, I do not want to overdose myself, since after reducing the Oxpolaís dosage, I really could focus better.

The information on your website gave me insight into soooo much! So, this is how I understand it: The Cymgen probably started the PLMS and the Oxpola worsened (augmented) it, and before I started the Lyrica I was supposed to be off of the Oxpola for at least 2 months. For the withdrawal and RLS, I needed to be prescribed something to help me sleep and something for the pain and all. What to do with the Cymgen though? Is there anything that will lessen the Fibromyalgiaís symptoms without causing further RLS? At the moment I use Cymgen 60mg, Lyrica 75mg twice daily and Estrofem 1mg. I also take Omega 3 and a multi vitamin tablet each day. For pain at the moment, I drink Panado, because of my fear for a foggy head, but, letís just say it does not work. I know that I urgently need something for sleep and the symptoms of RLS and pain, because little sleep is not good for the Fibromyalgia, causing the worst pain ever.

What combination of medication do you suggest in my case? I would so much appreciate your suggestions.

Mary-Ann (PS: I am a very healthy 52 years old)

Medical Reply

You are mostly correct in your conclusions. Many people taking Cymgen (duloxetine, called Cymbalta here is the USA) develop PLM while sleeping. However, most RLS experts do not treat those PLM as there is no good evidence that they really disturb the quality of sleep. The problem with treating PLM with a dopamine drug like Oxpola (pramipexole, called Mirapex in the USA) is that in patients who have a potential for RLS (like you), augmentation may occur and bring on RLS symptoms that then go haywire.

Now that you have RLS with augmentation, the treatment is more difficult and most doctors, including sleep specialists or neurologists are completely unaware of the correct treatment. Getting off (and staying off) the Oxpola is the best idea. However, as you have already noticed, there is about a 10 day period where the RLS goes crazy then calms down. We often use potent opioids (oxycodone for example) to help with that transition. Once the RLS calms down, it is much easier to treat.

We prefer to have patients with RLS avoid drugs like Cymgen but if you really need the drug for your fibromyalgia, then taking the lowest effective dose is recommended. You may need additional RLS treatment to counter the Cymgen.

Lyrica is a good fibromyalgia drug but it is also a good RLS drug. However, it often needs to be taken at higher doses (sometimes as high as 300 mg) to be effective and in many patients (such as you) that can cause unacceptable brain fog. If your RLS cannot be controlled with Lyrica, then you should discuss using low doses of opioids to help control your RLS in the long term.


Sent: Monday, May 15, 2017 7:05 PM
Subject: Treatment Options SSRI Induced RLS

When I am off antidepressants I have no RLS issues. I just started an Lexapro which gives me burning sensations in my feet and some restlessness in my legs. I have a long history with many antidepressants and cannot switch meds at this point.

In the past I have taken Gabapentin 200-300mg a night and my restlessness would go away. The problem is the Gabapentin was causing my ears to ring among other problems.

Years ago, I have tried some of the original RLS treatment medications that caused rebound.

Are there any other treatment options for me if I cannot stop the antidepressant I am on.

Gary W.

Medical Reply

You have a few options to discuss with your doctors.

Lyrica is in the same class of drugs as gabapentin but is chemically different so may not cause the problem with ringing in your ears. However, it can be expensive and may not be covered by your insurance to treat RLS as it is not FDA approved for that purpose (although we experts use Lyrica all the time to treat RLS).

The next alternative would be the Neupro patch. It is in the same class of drugs as the original RLS drugs (Mirapex and Requip) that you likely took in the past but is less likely to cause problems such as rebound since it is a 24 hour medication.

If those drugs don't work, then you would have to consider pure opioids like oxycodone, methadone, etc.


Sent: Tuesday, May 16, 2017 2:19 AM
Subject: iron infusion information for my doctor

I am trying to convince my general practitioner to support me in seeking iron infusions. I found I couldn't answer her main question. How does the physician determine that he will not be sending the patient into a state of iron overload? All I've found is a few sets of exclusion criteria for studies of IV iron in WED/RLS patients, typically serum ferritin >300 ng/dL, serum hemoglobin <12 μg/dL, or transferrin saturation ≥45%. Can you help me with this, please? What can I tell her, or where can I direct her?

My sleep specialist in Edmonton is supportive but says he doesn't think much of our chances of finding a hematologist who will do it. So even if I get my GP on board, it might be impossible. Or really really hard, to keep a positive spin on things.

Beth F.

Medical Reply

We normally give 1000 mg of iron (INFeD or Injectafer) and try to get the serum ferritin between 200-300. If we go a little higher with one infusion, there is no great concern. If your doctor is worried about iron overload (which is not very often a real concern), then you could get 2 infusions of 500 mg a week or 2 apart to make sure that you are not out of range.

The bigger problem that we face is getting the ferritin levels high enough and keeping them at those levels.


Sent: Thursday, May 18, 2017 3:31 AM
Subject: Mirapex side effect?

Have a long history with RLS. Most recently using OTC supplements geared to reducing inflammation, along with some dietary changes ( wanting to do better with these!), and have reduced my Mirapex dose to 1/3 of what it was. I guess I am especially sensitive to the sedative effects of some meds, because I settle my legs with the drug, but then cannot easily stay awake, unless there is a lot of activity around me

But what I really hate is the feeling of irritability in general that I have every evening after taking the drug...regardless of how my legs are doing. Have you heard of this as a side effect of these drugs? I really don't want to add any other med. (Gabapentin and Lyrica had me so zonked I could barely stand up.)

Please tell me if you have any ideas about the irritability problem. My whole mood changes after I take the pill (0.125 mg at 2pm and at 5pm), and between that and the drowsiness, I am a lousy companion in the evening. Thanks for any help, even if it's just to let me know you've heard this before and I'm not nuts!

Nadine A.

Medical Reply

It is not uncommon for Mirapex to cause significant sedation even at relatively low doses (especially in someone who is sensitive to the sedative effects of drugs). In fact, the drug label has a warning for next day sedation and driving your car.

Since you already have sedation side effects with gabapentin and Lyrica, that class of drugs should not be used.

You could consider the Neupro patch as it provides steady levels of a dopamine drug but sedation may also occur since it is in the same family of drugs as Mirapex.

All that is left are the pain killers. Tramadol is often quite helpful and you can consider that drug with your doctor. It occasionally causes sedation but may also cause insomnia (so only trial and error can decide this issue). If that does not work, then you may have to consider real opioids like oxycodone but they have a greater potential for causing sedation.

You might also want to consider the Relaxis vibration pad as there is obviously no sedation involved with that treatment.


Sent: Monday, May 22, 2017 6:26 PM
Subject: Requip Augmentation

I have had restless leg syndrome for about 4 years; when I first had it, I did not get any treatment and it went away after about 6 months. Then, when it re-emerged, I experienced a neck injury and was prescribed gabapentin to deal with nerve issues. The gabapentin worked and my RLS got better as well. Over time, the RLS got notably worse (only at night) and was disrupting my sleep, causing me to lose a few hours of sleep each night, so I went to my general practitioner back in 2014. I was tested for iron level and it was fine. He prescribed Requip at 0.5 mg and that worked great. A few months ago I went back to my doctor because the restless leg was getting worse again and he suggested that I pair 300 mg of gabapentin with the Requip. That worked, but only for a while.

Over the past few weeks, I've experienced worsening symptoms and some nights (maybe one out of three) where I experienced a couple of hours of lost sleep. I then did more reading and discovered the augmentation issue with Requip (my doctor hadn't mentioned this as a risk). So, I decided to stop the Requip (continued the gabapentin) and when I tried that a few nights ago, got only about two hours of sleep and found that I couldn't even sit still from about 2-4 a.m. I assume this is a result of the augmentation I've read about. I've been reading your site and note that you say the only way to avoid weeks to months of much worse symptoms is to replace the Requip with opioids.

My desire is to get back to "baseline" on my symptoms and see if non-drug approaches (e.g. I've started taking magnesium) will work. I'd really rather not use opioids if I can avoid it and am hoping that because my Requip dosing was small to start with, perhaps the "withdrawal" won't be as bad. I've cut some of my Requip pills in half, so will take 0.25 mg for a few nights before stepping down to none. Might I benefit from taking perhaps 600 mg of gabapentin temporarily as I do this (I know Horizant is supposed to be better, but I can't afford it)? Is there anything else I can do to get through the next few weeks without more drugs? Once I'm fully off Requip, I'm wondering about some of the mechanical devices I've seen, including foot wraps (Restiffic - not mentioned on your website) and vibrating pads under your legs (Relaxis), and if there are other non-drug approaches I might try. Also, I saw your comment on magnesium - do you think it's dangerous, or just unproven?

Al B.

Medical Reply

Since you have not been on a very high dose of Requip, you should be able to get off the drug without using opioids. A larger dose of gabapentin may be helpful but many people (hard to tell who until you try higher doses) do not absorb doses over 600 mg very well (Horizant is a better absorbed release form of gabapentin). Typically, the marked worsening of RLS that occurs when stopping Requip after augmentation has occurred lasts on average for about 10 days. Some patients get back to baseline in a week while a small percentage may take weeks or months (or never).

Magnesium does not have much of a downside other than it does not help RLS.

The Relaxis pad can be very helpful. I do not mention the Restiffic foot wrap as I have had very little feedback so far from my own patients (and the minimal amount of feedback has all been negative) and the one medical study that was done to prove its effectiveness was not very scientifically rigorous.


Sent: Tuesday, May 30, 2017 12:31 PM
Subject: Reglan withdrawal

I wasn't taking Reglan for long but as soon as i stopped my restless legs went through the roof? I am still waiting for it to settle down.

It took 3-4 months for my legs to settle down when I came off Sinemet many years a go so i hope it doesn't take as long as that.

Adam

Medical Reply

Since Reglan markedly worsens RLS (but only while taking it), it is very difficult to explain why you would continue to be worse once it is stopped.


Sent: Saturday, June 03, 2017 4:06 PM
Subject: Re: Severe RLS for 5 years

It's been 3 years since I spoke your about RLS problem that it is crippling me, I was put on many antidepressants drugs because the doctors here thought it's related to anxiety but in these past 3 years they have taken me off the antidepressants after their testing phase failed.
I hope you have my past email history my problem keeps getting worse in almost bedridden and resigned my job 2.5 years ago
It's like broken glass and sharp little things are stuck deep in my thighs and this problem has spread to my lower buttock too and the restless and urge to keep moving the legs continue too.

When I wake up it's like acid is filled in my thighs buttock and hamstring area The EMG, EEG plus the angiography have come up normal only the MRI has shown bulges in my 2 lower discs. Can this RLS and other sensations be related to the disc bulges?
The doctors here say if the bulges were responsible for anything then the pains must have been in my calf muscle and feet and not the thighs where I actually have them

I need to tell you that I live in Bahrain and RLS almost doesn't exist here and doctors have very little experience to deal with it and opioids therapy is something no doctor is ready to prescribe. The drugs I'm using now are Neurontin 800mg to 1400mg, Mayonal 150mg divided 3 parts in a day, revotril 2mg some times 6mg with Xanax but still get no sleep, thyroxin 100 micro grams and vitamin Bs called Nerobian.

But the Neurontin have stopped from relieving the pain no matter how much I take it lyrics long time failed to do anything so I don't take it plus I can't get much sleep and the time awake is in deep pains and sensations that make me sad to wake up alive

Omran

Medical Reply

As you have already found out, the antidepressants only make RLS worse (if that is what you have and it does sound like you do).

Your bulging discs can cause sciatica problems but they are very different than what you are complaining about. The sciatic pain can be in the thighs (usually side or back) but they are not associated with an urge to move and donít typically get better with movement.

Neurontin is a good treatment for RLS but it most often does not get absorbed well in doses higher than 600 mg so your current dose is likely not helping you much more than previous lower doses.

You are fairly massive doses of sedatives (Rivotril and Xanax) which do not help RLS. They may have some effect on muscle spasms but the major effect is that they should make you feel quite sleepy (unless you are really quite tolerant of these medications after years of usage which is also quite likely).

Unfortunately, since you already tried Sifrol (which can worsen RLS in the long run anyway so I do not recommend this drug) which has not been successful, the only major class of drugs left to try are opioids. I canít imagine that they do not prescribe opioids for chronic pain (such as cancer, bad disc disease problems, etc.) even in Bahrain.


Sent: Monday, June 5, 2017 6:18 PM
Subject: Re: Med Holiday?

 I am taking 2 Percocet (5-325), 3 or 4 Ultram (10 mg), 3 Lyrica (75  mg) every night. I still sleep poorly. I believe get 4 to 5 hours  most every night. I have a lot of sleepiness during the day. I have taken the  Percocet and Ultram for more than 15 years. I have taken the Lyrica for  around 2 years. I have never taken a drug holiday.

Should I try to take a drug holiday? If so, how should I go about it?   I assume it would be better to taper than to try to go cold turkey?

Tom K.

Medical Reply

We do not recommend using Percocet for RLS since the acetaminophen (Tylenol) portion does not help RLS and can only cause side effects without any benefits. Instead, we recommend oxycodone by itself. We usually do not mix Ultram (which comes in 50 and 100 mg strengths) since they are both similar pain medications (although different potencies of course).

It is impossible to figure out why you don't sleep well from your description (it could be due to drugs but it also could be due to other conditions such as sleep apnea).

There is likely no benefit from taking a drug holiday from any of the drugs that you are taking.


Sent: Monday, June 05, 2017 7:11 PM
Subject: Zembrin

I have RLS and am very careful about taking any supplements which would exacerbate the RLS symptoms. I am taking ZemBright Mood Plus which contains zembrin and KSM-66 ashwagandha for anxiety. Zembrin increases the levels of serotonin and serotonin neurotransmission to positively affect mood, attitude and outlook on life. My question for you is whether Zembrin can exacerbate RLS?

I feel worsening of RLS symptoms only after taking this supplement for 4 days. If it is a coincidence I am wondering?

Chen H.

Medical Reply

We know that drugs that raise serotonin levels tend to worsen RLS. Thus, if those drugs truly increase serotonin, then it is possible for them to worsen your RLS symptoms.


Sent: Tuesday, June 13, 2017 10:46 PM
Subject: newer SSRI antidepressants

Are any of the newer SSRIs any better for those with RLS? I know that non-SSRIs are best but I do need some kind of serotonergic medication for my anxiety.

Phyllis B.

Medical Reply

They are all equally bad. However, this can vary from person to person.


Sent: Friday, June 23, 2017 7:38 AM
Subject: Requip 1mg

How long does it take for Requip 1mg to take effect for RLS?

Leatha D.

If that is an effective dose, then it should work the first or second day. If it did not help, then you need a bigger dose. However, Requip (which may help initially) tends to make RLS worse over time (called augmentation) and should be used with caution. We now recommend other medications as first line therapy for RLS.


Sent: Thursday, June 29, 2017 9:59 PM
Subject: Gabapentin to Lyrica

I have been taking Gabapentin (800 mg) for about 4 months for my RLS. My symptoms still reappear, if I can't get to sleep, after about 45 minutes or so. I also think it is making me drowsy during the day. I want to ask my PCP to change me over to Lyrica to see how that works. Am I correct that Horizant will probably be no more effective and likely have the same side effects as Gabapentin?

If I do try the Lyrica, how do I switch over from the Gabapentin, can I simply substitute one for the other or do I need to taper off and then on?

Ed H.

Medical Reply

Horizant is a better delivery system for gabapentin. It permits gabapentin to get better absorbed and is released more slowly (over 12 hours) than regular gabapentin. The slow release action may possibly cause more daytime sleepiness.

Lyrica lasts as long as gabapentin but is much better absorbed. As such, it is difficult to determine what dose will be equivalent to your gabapentin 800 mg dose. I typically advise my patients to stop the gabapentin completely and start with Lyrica (between 50-100 mg) and increase the dose by 50-100 mg every 3-5 days until you find the correct dose.


Sent: Friday, July 07, 2017 5:49 AM
Subject: RE: RLS questions

I have written to you before about my 85 year old husband who has severe RLS for the past four or five yearsÖever since he had a shoulder replacement operation. (He has always suffered from periodic leg movement disorder)

He takes about a total of 17.5 mg-20mg of oxycodone throughout the day and 25 mg of Lyrica 2 or 3 times a day . He has noticed that he is getting more frequent breakthroughs and has troubled sleep. He is very active during the day and doesnít seem overly tired. So even though he gets fitful sleep, he does seem to get 7 or 8 hours in total.

He is very sensitive to any dopamine drug and has experienced severe augmentation while on the Neupro patch which helped him until it caused augmentation. He then switched over to oxycodone about three years ago.

My questions:

#1
Do you think adding a small dose of gabapentin or pregabalin would help? He does take Lyrica but honestly, I donít think it is doing much at the level he is taking. Or perhaps increase the Lyrica?

#2
Do you think concentrating the taking of the oxycodone in the early afternoon (5 mg around 4 pm) and early evening (5 mg around 8) and then night (5 mg around 12) is better than taking it when he feels an attack coming on? I guess he could try that and see how that works?

#3
Often when he has an attack and he stands up, he still is in pain/having those odd sensations. Is it possible to continue having these symptoms while walking around and standing? I wonder whether some of his symptoms when upright are stress-/anxiety related?

Lucy G.

Medical Reply

1. Pregabalin is simply the generic name for Lyrica so they are identical. We normally do not mix gabapentin with Lyrica since they are similarly acting drugs but Lyrica works more predictably as gabapentin often does not get that well absorbed into the body. I usually suggest that my patients increase the dose of Lyrica slowly (for about 5-7 days before increasing from a previous dose) until they find the lowest dose that provides adequate relief or until side effects occur (usually sedation). In the Lyrica medical studies, they went as high as 300 mg in a single evening dose.

2. The trick with taking any RLS medication is to take it before symptoms occur, not after. It is so much easier to prevent symptoms than to relieve them. Often, a much higher dose of medication (like oxycodone) is needed to relieve symptoms compared to preventing them. Oxycodone takes 30-60 minutes to kick in so the timing should be adequate to prevent symptoms (most patients know what time of day or situations that RLS starts occurring).

3. RLS may occur in some patients even while standing up. However, walking should begin to relieve RLS symptoms although with severe cases, the walking may take quite a while to completely resolve the RLS symptoms. If symptoms occur with starting to walk (from being at rest), then they are most likely due to something else and are not RLS.


Sent: Wednesday, July 12, 2017 1:53 PM
Subject: Mirapex withdrawal

I have been taking .125 milligrams of Mirapex for ten years. I was prescribed Mirapex when I was under extreme stress when I was caring for my father who had terminal cancer. I was very anxious and depressed and had difficulty sleeping. I was also prescribed fluvoxamine which I have since stopped.
I have read many articles about Mirapex and wish to discontinue my use. I was diagnosed with low sodium and have read that Mirapex can cause low sodium in some individuals. Because I did not have RLS before my fatherís illness, I would like to know what my baseline for RLS is and whether I can treat it without taking medications. I did have leg issues when very young and I understand that what we called ďgrowing painsĒ is now considered RLS. However, I had not had any symptoms for about forty years when I started Mirapex.

My physician has been very supportive, but I have not been able to convince her that it is a good idea for me to get off of Mirapex. Her belief is that if it is working, then why stop? I have cut my tablets in half for the last three days and have had very little rest. I understand that your advice is to have a medicine to help with this process, but would like to have some support to provide to my physician.

Can Mirapex affect sodium levels and if so will discontinuing it allow my levels to increase? If my physician is willing to prescribe a medication to help me get off of Mirapex, what would be best for someone very sensitive to medications?

Is it possible that the RLS symptoms I am having on a lower dose of Mirapex are caused by the decrease in dopamine and not due to underlying RLS? In other words, is it possible that my issues ten years ago were due to severe anxiety and not RLS?

Mara W.

Medical Reply

It is very hard to give you any advice or guidance since it is not clear that you do have RLS (I would need to see a patient to make sure) especially in light of you not having RLS when you started Mirapex. I cannot understand the logic/reasoning behind your doctor prescribing Mirapex for a patient who does not have RLS (it sounds like you had anxiety at the time but not RLS). If you really have RLS now, then the Mirapex could be making it worse (called augmentation) and then getting off the Mirapex can be difficult as the RLS usually gets markedly worse for 10 days.

Mirapex is not known to affect sodium levels.

A Reply from Mara

Sent: Thursday, July 13, 2017 6:07 AM
Subject: Re: Mirapex withdrawal

In follow up to your response, if I did not have RLS when I started taking Mirapex and my symptoms were due to severe anxiety, is it possible that I would have RLS like symptoms when trying to stop taking Mirapex after ten years? I am wondering it if would be similar to what drug addicts go through when they stop taking an addictive drug?

The symptoms I have been having when attempting to cut back on the Mirapex seem to be very similar to RLS symptoms based on my research. When I stopped taking an anti-depressant many years ago, I was unable to sleep for three days even after cutting back very slowly from a very low dose over a long period of time. So I am wondering if this could be the same thing?

I have read the information you have provided. Thank you for sharing your time and expertise! I have an appointment with my neurologist and just want to be more informed.

Mara W.

Medical Reply

It is difficult to answer your question as a lot can happen over 10 years. Taking Mirapex should not cause someone to develop RLS unless they would likely have developed it anyway (perhaps later on without being on Mirapex). Mirapex only acts like an addictive drug on patients who have RLS as they sooner or later need more and more of the drug and canít easily stop it.

A Reply from Mara

Sent: Monday, August 28, 2017 2:06 AM
Subject: Re: Mirapex withdrawal

I am in the process of reducing my Mirapex and have been on 1/2 of a .125 tablet for a week. Have had very little sleep. My neurologist is unwilling to prescribe any pain medications to help me rest. Some nights I don't have any RLS symptoms, but feel unable to relax at all and have insomnia.

Would it be best to completely stop at this point in order to get the Mirapex out of my system sooner? Is it possible to suffer from DAWS even though I have only been on the lowest dose? I am extremely medication sensitive. I have never had any of the gambling or other issues with the Mirapex. My neurologist keeps telling me that I should not have any withdrawal or augmenting issues because I have been on the lowest dose. Does that make any sense to you?? I am getting pretty desperate at this point.

Mara W.

Medical Reply

DAWS is more common in patients with Parkinsonís disease and occurs very uncommonly in RLS patients especially those on low doses.

Augmentation can occur at any dose of a dopamine drug although it is considerably more common at higher doses.


Sent: Friday, July 14, 2017 8:57 AM
Subject: my story

I am a 70 year old female who has suffered with chronic sleep maintenance (and more recently sleep onset sometimes) problems and PLMD (with some RLS) for 10 years, starting around the time of my late menopause. My mother had PLMD. My sleep study showed mild sleep apnea and I use a CPAP regularly, although it did not change anything about my sleep problems. I have PLMD around 70% of the nights, most often but not always the second part of the night, and RLS less often, less than 25% of the time. I consider a good night sleep to be only two awakenings and none where I do no more than pee and return to sleep.

I have tried many many treatments and seen many doctors.

Initially my sleep problems were treated with 15 mg. Restoril which I took for several years and it did address both sleep and movement problems. I weaned off of Restoril many years ago. When the sleep doctor suggested I try Restoril again, I tried 15 mg. for several weeks last year and the improvement was minimal unfortunately, but the PLMD/RLS I suffered for weeks after quitting this time was the worst I have ever had. I still take 2mg.-5mg. valium occasionally when I get desperate.

I have asymptomatic Crohnís disease and a bowel resection and have iron infusions, having just finished my fifth every 3 months. The doctor said if my iron is down in six weeks this time, I can get another one sooner. I have not noticed any great improvement in my sleep or PLMD/RLS with the elevation of my ferritin so far.

I have taken every supplement I think. I am sensitive to drugs and supplements (for instance, I got hives from GABA.) I often find a hot shower on my legs can relieve the PLMD mid-night. I do think I have circadian rhythm old age issues and melatonin, when I got up to 6mg., seemed to help some but it made my adult-onset asthma come back, and with quitting melatonin (which I took for months to try and find the right dosage) the asthma has gone away again.

I struggled with finding the right dose of medical marijuana for a year. I felt CBD oil helped enough to justify the expense, but no better than the doxepin which is quite cheap (although the marijuana didnít have the hangover). There are still other options of medical marijuana I have not tried. I cannot tolerate the psychoactive THC as I become paranoid and anxious. I also tried Ropinoherb PLMD (a Chinese herb); it made me strangely anxious and I only took one pill. I have thought of pursuing Chinese medicine as well more systematically.

I have never pursued cognitive behavioral therapy as my mind is not racing and I am not anxious nor worried, just not sleepy at the right times. I can be quite sleepy at 7pm. I have used meditation and it has helped less than 25% of the time. I am retired so I am not under a lot of stress.

I have currently been titrating up with doxepin, up to 3.5 ml. The doctor says I should give up at 4 ml. if it isnít helping sufficiently. It helps some with sleep maintenance, not so much with PLMD/RLS and I am hoping/waiting for the hangover effect to go away as I take at least one nap daily and feel drowsy all day, and I cannot drink coffee to relieve that because of the likelihood of exacerbating the PLMD/RLS. I have another week or two of this experiment.

I love valium but was concerned about the cognition issues which is why I got off of it, although I wonder if the cognition issues of my poor sleep outweigh the valium concerns. My GP is hesitant to start me on valium (although my sleep doctor would) as he has never had a patient who did not need to increase their dosage. From reading your treatment page, I am not sure if you would recommend valium for me (with the caveat that I take 2 days off every two weeks) as my PLMD does wake me up. Or maybe I could just take more when I wake up? I wonder if I could take doxepin on those days off? Or just use it PRN?

My current sleep doctor has suggested going on methadone but I am concerned about the cognitive decline. I am not sure about the other downsides. I asked him if it would help with my sleep problems. He said it makes some people sleepy, some not.

I happen to have a lot of hydrocodone-acetaminophen 7.5-325/15 (for severe coughing jags) and I thought maybe I would try it for the movement problems, although I doubt if it would help with sleep maintenance, and I am not sure of the correct dosage. Maybe I could take so many ml PRN?

Mara M.

Medical Reply

Treating PLM can be very problematic. Although the dopamine agonist drugs are the most effective drugs for PLM, they can cause a marked worsening of your RLS (called augmentation) with time. Opioids like methadone work great for RLS but do not help PLM very much.

Benzodiazepines like Valium and Restoril do not really decrease the amount of PLM but rather decrease arousals from PLM. We typically suggest to avoid very long acting medications like Valium (1/2 life of over 50-100 hours) but rather to consider Restoril or Xanax. However, as you have noted, the drugs may work much better in the long run if not taken every day.

Drugs in the gabapentin family (which includes Lyrica and Horizant) also decrease arousals from PLM (as much as dopamine agonist drugs) but are not as effective as dopamine drugs for decreasing the amount of PLM.

Doxepin can induce sleep but tends to worsen RLS and PLM.

A Reply from Mara

Sent: Friday, July 14, 2017 10:13 PM
Subject: Re: my story

My goal is a good night's rest, so I am not concerned about how much RLS or PLM I actually have, only that it doesn't disturb my getting a good night's rest. That being said, I understand you would recommend Lyrica, Horizant or Xanax (with breaks) for my situation?

By the way, 3.6ml of doxepin doesn't make me sleepy, but helps some with sleep maintenance. Are there any other drugs effective for sleep maintenance that don't increase PLM awakenings?

Also, you did not mention hydrocodone's efficacy, or lack thereof. Again, many thanks and I have talked to many sleep specialists and none of them distinguished much between PLM and RLS treatments.

Mara M.

Medical Reply

Another issue is that resolving/decreasing PLM does not always improve sleep. It is very possible (and actually quite likely) that the PLM may not actually be responsible for your poor sleep (according to the few studies that have looked at PLM and sleep quality/next day alertness). Therefore, it is very difficult for me to give you any personal advice on what to do (especially since I have not seen you as a patient) but rather just give you general information about PLM and drugs.

You can download the RLS medical alert card on our website as it contains all the drugs that worsen RLS (which almost always applies to PLM).

Hydrocodone is an opioid so as I mentioned in my previous email, opioids have very little affect on PLM.

Most sleep specialists are not that expert on RLS/PLM.


Sent: Thursday, July 27, 2017 8:05 AM
Subject: Is it RLS?

I'm not sure if my symptoms are RLS or something else. Whenever i try to sleep my whole body jumps. It's like when you're just dropping off to sleep and you think you've tripped. Sometimes it seems to be predominantly my legs but most of the time it's my whole body. In fact if i am asleep i very often get woken up by this jumping. It varies in intensity but happens most nights to some degree.

Susan M.

Medical Reply

What you are experiencing is called a hypnic jerk. They are very common and of now medical importance.


Sent: Saturday, July 29, 2017 5:13 AM
Subject: Stroke and RLS

My wife had a hemorrhagic stroke in October, 2016 and for the past 3 months has had severe RLS resulting in an almost total lack of sleep. She is in a nursing home based on total inability to self care. I have been given permission to have a motion triggered camera in her room and it shows that she gets almost no sleep at all. Recently the neurologist did an iron panel and came up with the following results: ferritin 61 ng/mL (standard level 11-204), iron 22ug/dL (standard level 45-150), TIBC 311 ug/dL (standard level 261-478), Percent Transferrin Saturation 7% (standard level 15-55%). He put her on 325mg iron sulfate once a day on an empty stomach with 100 mg Vitamin C.

He also put her on Melatonin to help regulate her circadian rhythms. She has already been getting Prozac as a standard treatment for stroke patients to provide mood elevation and to enhance muscle control. She developed seizures starting in November 2016 so she is now on Keppra 250 morning and night, as well as trazodone to aid getting to sleep.

The iron supplementation has only started 4 days ago so I do not expect any results yet. My question is this: should I ask the primary care physician to add Sinemet, Mirapex or Requip into the mix to try to give her some relief while we wait 3 months to see if iron supplementation works? I had asked the primary care physician about Requip and he does not like it because of the possibility of causing hallucinations.

With Sinemet or Mirapex, how soon would symptoms abate? In other words, if iron deficiency is the root cause, can we do anything that will help her get some sleep while waiting for her iron levels to increase?

Bob W.

Medical Reply

There are several issues here that could lead to improvement of your wifeís RLS.

The Prozac could have triggered/worsened her RLS and taking her off that medication (if appropriate otherwise) may be quite helpful. Substituting Wellbutrin could be helpful also as it does worsen RLS.

Since her Transferrin Saturation is very low, an iron infusion with INFeD could be very beneficial as oral iron can take 6 months to help (if it helps at all).

We donít use Sinemet but Mirapex or Requip (they both have equal potentials for hallucinations) could be very helpful but once those dopamine drugs are started they are very difficult to stop and they tend to cause worsening of RLS over time (called augmentation).

I would suggest discussing a trial of Horizant, Lyrica or gabapentin (in that order) which could help the RLS immediately.

A Reply from Bob

Sent: Saturday, September 09, 2017 5:02 AM
Subject: Re: Stroke and RLS

Hello again. We have had two iron infusions with Feraheme (second infusion was Wednesday). Anemia sites suggest that iron infusions take up to 6-8 weeks to show maximum benefit so I assume it is too early for me to expect significant changes during her sleep. My next step is to ask the PCP to wean her off of Prozac. Do you know of any studies where Prozac has been implicated as a trigger for RLS?

Bob W.

Medical Reply

It usually takes about 4 weeks for RLS symptoms to improve after IV iron therapy but this can vary.

There are no studies on Prozac or other antidepressant medications worsening RLS but there is lots of clinical evidence of this interaction for those of us treating many RLS patients. There are some patients who do not experience a worsening of RLS with SSRI or SNRI antidepressants but most unfortunately experience this issue.













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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 116.
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