A good place to start: Managing RLS/WED

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
ViewsAskew
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A good place to start: Managing RLS/WED

Postby ViewsAskew » Sun Jul 24, 2005 8:08 pm

This thread (series of posts) has changed and grown over time. If you have any trouble in this section with terminology, please look for the "dictionary" that is in one of the later posts in this section. There is no "right treatment." Each of us is different, the amount and severity of RLS/WED is different, and what works differs person to person.

WED Medical Bulletin: Causes, Diagnosis, and Treatment
First, review the WED Medical Bulletin, published by the RLS Foundation. While intended for doctors to read, it's great to read yourself. Then, highlight things you think apply and give it to your doctor and ask him or her to review it and tell you what he/she thinks. It also includes primary features - use this to help with diagnosis.

New to the Site
Information for new visitors to the RLS Foundation's website (and changing all the time, so good to review if you've been there before, too). From documents for those just diagnosed to ones about current treatment options, there are many options on this page. Some things are for members only. If you are not a member, it is worth joining. Financial assistance is available.

Start with lifestyle, diet, and the like:
    -IMPORTANT: Have doctor check your serum ferritin iron levels and also check to see if you are anemic. If you are going to take or are taking dopaminergic drugs (Sinemet, Requip/ropinerol, Mirapex/pramipexol, Neurpro/rotigitine, and so on), your ferritin level should be at least 10[0/b], according to the current research. Serum ferritin levels should [b]be at least 50 for someone not taking dopaminergic drugs.

    -Try vitamins (different people get different results; vitamins and minerals people have mentioned that have helped include D, E, C, iron, magnesium, calcium, folic acid, B complex). Recently, vitamin D has surfaced as very important. Also, as of summer 2013, there is information that we have too much glutamate in our brains. This may be what makes us wide awake at night. There is no evidence, yet, that supplements help reduce this, but some people have good luck taking amino acids. See posts in the Non-prescription Medicines, Supplements, and Vitamins section.

    -Review your diet - many people find some food and beverages can make it worse. rlshelp.org has a list of possibilities. Several of our members have difficulty with artificial sweeteners, for example. There are many current and older discussions on our board about diet, including the Wahl's diet, gluten free diets, low tyramine diets, and more. For secondary RLS/WED, inflammation may play a role, too, and diet may help with that.

    -Stop alcohol and caffeine, especially before bedtime. Since a caffeine-like substance is in chocolate, you may need to avoid that, too.

    -Assess sleep hygiene and be consistent EVERY night; see the post below for more info.

    -Determine what kind of RLS/WED you have: primary, secondary, or idiopathic; this may change how you manage it. See the remaining posts in this topic for more info.

    -Get "right" amount of exercise for you (too little or too much may both make RLS/WED worse) and stick to it consistently (time of day, amount, type).

    -Stop other medication that may worsen it (see the list below).

    -Consider alternative ways to deal with symptoms. Jill Gunzel, the RLS Rebel wrote a book, The RLS Rebel, that may still be available at Amazon.com.

    -Check out the Physical Treatments section here: compression stockings, specific exercises/yoga/stretches, massage or massaging devices, warm or cold baths, heating pads or cold wraps, ace bandages, etc.

More Help Needed?
After lifestyle, you can assess if you need more help or if that is enough. If you need more help, please get it. Your quality of life is important and shouldn't be wasted:
    -Find a good doctor who will listen to you and be a partner in your treatment (there is a short list here of doctors that our members have liked. The Foundation also has a list on the main website; we'd suggest you call and ask questions before you choose one of the doctors; just because they are on this list doesn't mean they are a good RLS doctor, just that they want to treat RLS).

    -Have a sleep study to see if PLMS (periodic limb movement in sleep) is also a problem and if you need medication for that; PLMS do not always interrupt sleep and only a sleep study can determine if they do. A sleep study will diagnose PLMS and may show the doctor how much difficulty you have sleeping, but it won't diagnose RLS. It also may find that you have apnea. It's very important to treat apnea if you have it.

    -Consider medication if your quality of life is compromised by the lack of sleep and you can't improve it enough with lifestyle and other changes.

That's when you look at the Medical Bulletin and research as much as you can about medications, what they do, how they work, how long they work, etc. Ask the doctor what he/she thinks you should do. That's a good time to read about people's experiences with drugs and ask if what the doctor is recommending is commonly used or something we're familiar with. You may also want to review some non-prescription drugs and see if that is an appropriate choice for you.

Also review the Mayo Clinic Proceedings, created in conjunction with the RLS Foundation. This supplants the older Mayo Clinic Algorithm.


Trouble with Treatment?
Augmentation
Some people who take pramipexole (Mirapex), ropinerole (Requip), or cabidopa/levadop (Sinemet) have problems with augmentation. While less common, people using the patch (Neupro) have also experienced this.

Does the following sound like you?
You started taking one of these and it was great. Sometime later, a few weeks to a several years, you needed more of the drug - the drug seemed to stop working or the symptoms became a bit or a lot worse. Your doctor likely increased the dose. Over time, it's been increased at least once and possibly several times. You now take more than you started taking it seems it's just getting worse. The maximum per dose amount of pramipexole is recommended to be .25 mg and 1 mg of ropinerole. If you take more than this per dose, you are probably taking too much.

If this, or something similar to this, describes your circumstances, please learn more about augmentation. There is more about it in the next post in this thread.

Other Trouble
Intolerable side effects, excessive fatigue, heart issues and so on can all make taking medications seem worse than the RLS itself. Read as much as you can. Post in other threads.


Edited April 2015
Last edited by ViewsAskew on Tue Jun 16, 2009 6:42 am, edited 29 times in total.

ViewsAskew
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Great Information to Print for Your Doctor

Postby ViewsAskew » Fri Jul 29, 2005 4:55 am

The links in this post take you to other Websites or to sections within this Website. Some of these can provide the information your doctor may need to treat you more effectively. Doctors often respond better when you take only one article or document per visit, or they feel overwhelmed and don't read any of it!

The Basics of RLS
Do you have RLS - the features or criteria.

Great introductory article suitable to share with your doctor, including references to studies regarding treatments such as opioids.

European site that Corrie found - great info about studies and the populations that get WED.

UK RLS Site

Specific info on many sleep disorders - good section on PLMD. NOTE: Researchers currently say that people with WED cannot have PLMD as a disease. PLMD is only diagnosed if you have NO other sleep disorders. if you have any other sleep disorder, they just say that you have PLMS - periodic movements in sleep.

Johns Hopkins RLS site. It includes a list of medical studies they are doing.

Australian RLS site - lots of info including patient recommended doctor list!


Treating RLS: for you and your doctor

Strategies for theTreatment of WED written by Dr Buchfuhrer. This paper is (as of Feb 2013) the most up-to-date summary of RLS/WED treatment that the moderators know of. Most importantly, it is a published reference in a medical journal, and thererfore carries a lot more weight with your doctor than "I saw it on the internet".

This relatively new site, Epocrates Online, has up-to-date information on WED/RLS. You can use it and refer your doctor to it.

Dealing with augmentation(when a dopamine drug, such as pramipexole, ropinerole, or Sinemet makes your symptoms worse)

So. Cal. support group: comprehensive WED med information, pages of letters answered by doctor on how to deal with WED, links to other sites, etc.

Many articles about WED; good for your own knowledge or to give to primary care doc

Good general article; written for primary care doc audience


Alternative and Personal Views of RLS
Interesting theory on hypoglycemia and how it may exacerbate RLS

Quality of Life statements by our members - go here to add your own.


Drugs to Avoid
Fascinating article on stopping anti-depressants, specifically about difficulty of stopping Paxil (very scary)

A list of medicines to avoid (that worsen RLS):

Secondary RLS or RLS with other Medical Conditions
Pregnancy and RLS (from this site)

Many great abstracts and research studies (you have to do a search on RLS - it's worth it!)

RLS and ADHD

Specifics of PLMs or PLMD
PLM information and treatment options

PLM Article

Stanford PLMs article

About RLS and PLMS and PLMD


Studies and Study Results and Information
Lists many study abstracts over a 20 year period with some interesting results

Short article on the relationship between ADHD and RLS

Article on donating blood and RLS

Ferritin, transferrin, and CFS iron study done in Japan

MRI shows low iron in brains of people with haemochromatosis


Other Interesting Info
Place to check drug interactions


The Human Side of RLS Other places to chat or share information
Online forum http://www.talkaboutsleep.com/message-boards/index.php
UK online forum http://www.ekbom.org.uk/forum.htm
Onlineforum in Australia
Online Yahoo RLS and PLMD forum
Online Yahoo RLS forum
Online Sleepnet forum
Online hastypasty forum
Florida/Georgia support group

Good Reads
The following books are all excellent resources for you and your doctor. If you can afford it, get them all.

Clinical Management of Restless Legs Syndrome, edition 2, 2013, by Lee, Buchfurer, and Allen. This gives up to date medical information for your doctor. It's great to have and take with you to visits. The prior edition, printed in 2008, was by Hening, Buchfuhrer, and Lee. Many of us have bought copies to give to our doctors.

Restless Legs Syndrome: Coping with Your Sleepless Nights
, by Buchfurer, Hening, and Kushida. This is written for the patient, but also has some solid medical information. It's a great resource.

Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic
, by Robert Yoakum. Also written for the patient, this books provides a lot of helpful information. Of the three, it has the least medical info (such as dosages and medicines), but it covers the basics. A very good read.
updated 03/16/09[/b]
Last edited by ViewsAskew on Mon Mar 16, 2009 6:55 am, edited 30 times in total.

becat
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Bed time routine

Postby becat » Sun Aug 07, 2005 10:17 pm

Hi Ann,
You and I have chatted about this before, but my brain fails me and who knows where it's at.
So, I thought I'd add this to the Newcomer thread in hopes that helps along the way.

Bed Time Routine

It's important to get a normal routine going at bed time, it's more than helpful if your on a good treatment path and can rest. I know that it's difficult to do this regularly if your still not able to sleep. But try if you can to do the same things the last 20-30 minutes before you go to bed.
This is also something that gives you a little of control when your body isn't.
It's all about doing a combination of things that are healthy and mentally good for you. Bed time can be such a fight, give yourself this routine as a good thing that ends the day. Be good to yourself and make some of these simple and special for you.
It may be a special thing that you like to wear, a pillow that you use, reading......whatever it is do it consistently.
You should also add somethings that you can use if you travel. Some of us have a hard enough time at home, but traveling makes it all worse.
Since I have gotten on the right meds and the right dose I was able to get my routine going. It's been so helpful.

My Example:
Meds on time through out the day and evening. (we always say it and it's true)
Last 20-30 minutes before lights out.
Make the dog "do his business"
Brush my teeth
Wash my face and put on the eye creme (not cause I'm old just don't' want to look my age...LOL it's a nice thing for me)
Then it's bed time...........
I lay out 3-4 TUMS to eat slowly. Not great calcium, but it's some and it's soothing to my stomach as well.
I put on the same brand and scent of lotion
Then I read, this I let happen til the meds kick in, it's a variable thing.
I have night blinders if I need them, great for travel. Hotels often have bright lights and curtains aren't always total blockage of that light. Some nights it's helpful just to make my eyes shut and stay that way.

All of this is up to you. Make this routine your own. It's about making you comfortable and adding control to this RLS junk.
Enjoy and be nice to yourself in the process.

trevb
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If it's not RLS, what is it?

Postby trevb » Tue Aug 30, 2005 10:02 pm

Though RLS is a syndrome, meaning that different people experience somewhat different symptoms, there is a consensus among the RLS research community that a positive diagnosis require all four criteria to be met. So, what do you do if one or more criterion don't apply to you? Well, you could be interpreting the criteria too narrowly, or possibly you could also have something else.

Other possibilities include peripheral neuropathy, peripheral claudication, leg cramps, akathisia, and in children, ADHD. RLS and akathisia sufferers have several differences. Akathisia sufferers also report a feeling of restlessness inside along with a compulsion to move in response to the feeling. However, they report only some relief of the inner restlessness-feeling when they do move. Another difference is that RLSers usually feel some sort of sensory symptoms, such as pain, creepy-crawly feelings, or some other uncomfortable sensation. For the RLSer, these symptoms occur primarily when at rest.

RLS patients almost universally have a worsening at night, while akathisic patiens feel worse when standing or sitting in one place. Also, PLMS is uncommon in those with akathisia as is dyskinesia while awake, yet are common is many RLS patients. Thos with akathisia often have a tremor of extrapyramidal rigidity. This is caused by neuroleptic medication. Lastly, RLS pan be primary (often genetic) or secondary to many conditions.
http://www.psychiatrictimes.com/showArt ... =186700525

(the following is completely copied - I will try to re-write it soon)

Several significant psychiatric, medical, and sleep disorders may be mistaken for RLS. Anxiety disorders often involve motor activity but evidence of sympathetic activity, such as sweating and palpitations, are present as well. "Vesper's curse" is a transient lumbar stenosis caused by venous plexus engorgement from increased right atrial filling pressure while lying down; the stenosis results in lower-extremity paresthesias and lumbosacral pain, which arouse the patient from sleep.[48]

Children with ADHD experience high levels of nocturnal activity.[49] Furthermore, the sleep disruption of PLMD and motor activity of RLS while awake could contribute to the inattention and hyperactivity seen in children with ADHD.[50]

PLMS also must be clearly distinguished from upper airway resistance syndrome.[51,52] With technologic advancements in polysomnographic and respiratory monitoring, it is now recognized that PLMS may be triggered by subclinical hypopneas or respiratory effort-related arousals and improve after nasal continuous positive airway pressure is administered.

Nocturnal epilepsy can manifest as localized or generalized tonic-clonic activity. Enuresis and postictal confusion may accompany seizures but not PLMD. Nocturnal leg cramps are painful spasms of the calf or foot that may occur with greater frequency during pregnancy; in women and the elderly; after intense exercise; and as a result of diabetes, fluid and electrolyte imbalances, and musculoskeletal disorders. Nocturnal paroxysmal dystonia is characterized by stereotypic dystonic movements that can follow sudden awakenings from non-rapid eye movement (NREM) sleep.

Rapid eye movement (REM) sleep behavior disorder occurs when REM sleep-related muscle atonia is lost. Body movements ranging from simple motions to highly elaborate enactment of dreams may occur, and typically begin 60-90 minutes following sleep onset.

Rhythmic movement disorder typically affects young children and is characterized by repetitive, stereotypic, rhythmic movements (eg, head banging, head rolling, body rolling, body rocking) that precede sleep onset and continue transiently into early light sleep. Sleep starts are brief asymmetric contractions of the extremities at sleep onset that can be accompanied by a feeling of "falling."
http://www.medscape.com/viewarticle/468433_6

RLS can also be confused with positional discomfort. Positional discomfort symptoms occur only in one very specific body position. They are relieved by changing positions bu do not require any other movement. RLS, however, should and does occur in any position while at rest and relief requires either "alerting" (waking up, concentrating, paying attention) or some specific movement such as walking or moving about. At the least, it requires massaging or punching the muscles involved.
http://www.medscape.com/viewarticle/505085

Adding to this, one of our own members was diagnosed with small fiber neruopathy. She also does have RLS, but the symptoms were similar enough that the neuropathy was missed for awhile. She listed the following symptoms: "aching, burning pain and tingling. Some stinging. I also have fasiculations from the motor part of it and some weakness."

The testing they did to determine the neuropathy included: QST and autonomic systems testing.

Seems that aching, burning pain, tingling and stinging (all of which I've heard RLS people say applies to their RLS), should probably be researched. One distinguishing characteristic may be weakness, however, so if anyone has weakness, please go to the doctor. It is much less common the large fiber neuropathy. Here are some links with more info: Johns Hopkins, CNI Review.

Also, small fiber neuropathy is associated with several autoimmune conditions, including celiac disease. The most current research indicates that celiac shows up as odd neurologic symptoms most frequently, but also as anemia. Up to 35% of celiacs have RLS, so it's likely some people visiting this site have undiagnosed celiac, which occurs at a rate of 1 in 100, but is undiagnosed in about 97% of people who have it. Here is another postabout it.

ViewsAskew
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Postby ViewsAskew » Tue Jan 24, 2006 7:03 am

Primary RLS is when something else didn't cause it. It just is there - either for no known reason (idiopathic) or because your family had a gene for it and more than one of you has it. When you have secondary RLS - that is, caused by another condition - you manage RLS differently. Often, getting the original condition under control completely resolves the RLS. Sometimes, however, it does not.

I've read different accounts in different articles and reviewed at least 10 articles and sites to come up with the following list of causes of secondary RLS:

Type II diabetes, pregnancy, iron deficiency, kidney failure/uremia, peripheral neuropathy, rheumatoid arthritis, folate deficiency, amyloidosis, lumbosacral radiculopathy, lumbar stenosis, Lyme disease, monoclonal gammopathy of undetermined significance, Sjögren syndrome, or vitamin B-12 deficiency.

Other diseases/conditions with an association include: Parkinson's disease; celiac disease; neurologic lesions; gastric surgery; chronic obstructive pulmonary disease (COPD); some tumors; multiple sclerosis; chronic venous insufficiency or varicose veins; medications or certain substances, such as alcohol, caffeine, anticonvulsants (eg, methsuximide, phenytoin), antidepressants (eg, amitriptyline, paroxetine), beta-blockers, histamine-H2 antagonists, lithium, neuroleptics, withdrawal from vasodilators, sedatives, or imipramine; cigarette smoking; myelopathy or myelitis; hypothyroidism or hyperthyroidism; acute intermittent porphyria; fibromyalgia; and cholesterol peripheral microemboli; back injury or surgery.

7/30/06 - I just read that RLS is common with encephalitis patients.
3/12/07 - I just read that RLS is more common (than in general population) in those with hereditary spastic paraparesis (HSP). http://www.websciences.org/cftemplate/N ... D=20065281
3/14/07 - A member just reported about Benign Fasciculation Syndrome (BFS) - many people with it report having RLS - is sounds to me as if can be hard to tell them apart; not sure technically what the degree of association between having BFS and RLS is.

To me, this list is daunting! That is a lot of possible diseases that anyone without a clear familial association could have. I think the best we can do is to realize that our RLS could possibly be the result of one of these. Many of these are rare, most of them have particular symptoms that are easily identified. When RLS is secondary, the person has to have the disease before the RLS, so if anyone has any other symptoms that do not fit in with RLS, they should press their PCP or specialist to review those and do the appropriate testing as needed.

The one disease that I can see that presents with widely varied symptoms or possibly no symptoms yet is very common (and commonly missed by doctors) is celiac disease. In my opinion, and I am not a doctor, since celiac disease affects 1 in 150 (approximate - different studies show higher or lower prevalence), and 97% of those affected are undiagnosed, I'd push my doctor for a complete celiac blood panel test if I had RLS and had no familial connection, had ever had anemia, had any gastro issues, or had any strange, unexplained neurological symptoms.

The good news? Secondary RLS most always resolves when the primary disease/condition is addressed. I say most always because in the case of back surgery, nothing can be done to reverse the surgery and in pregnancy, sometimes the RLS stays even after the pregnancy has ended, etc.
Last edited by ViewsAskew on Wed Mar 14, 2007 5:26 pm, edited 7 times in total.

ViewsAskew
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Dictionary

Postby ViewsAskew » Tue Jan 24, 2006 7:08 am

I'm adding a little dictionary of terms that was in another post. We throw around acronyms and not everyone knows what we're talking about:

Augmentation = RLS symptoms occur more frequently, earlier in the day or more severely. This is only caused by the dopamine agonist drugs (Requip, Sinemet, Permax, Mirapex, etc.). Symptoms usually revert to the prior level when the drug is stopped

DA or dopamine agonist = class of drug developed to treat Parkinson's disease, such as Mirapex, Requip, Sinemet, Permax etc.

Dependence = a state when your body needs the drug you've been taking. This can occur with almost any drug we take. When dependent, you get sick when you miss a dose or don't take the drug. It's important to stop drugs slowly

Drug Holiday = taking a break from one drug for a week or two while using a different drug. When taking DAs, this is done to prevent augmentation and tolerance. An example would be to take Mirapex until it seems to not work at well or you think you need a dose increase. Then take Requip for 2 weeks. When you start the Mirapex again, it should work well again at it's original low dose. Another example would be with an opioid to prevent dependence. Take the opioid for one month then take Ultram for a week. This prevents addiction and dependence

Ferritin = a measure of the iron you have stored in your body; a much more important indicator than your hemoglobin in terms of RLS; people with RLS should have this tested and get theirs to at least 50. Levels of higher than 225 or so can be dangerous, so it's important to have it tested regularly when increasing it

Half-life = the length of time if takes for half of the drug to be eliminated from your body. If something has a long half-life, then some of the drug can remain in your body for several days. This can be a good thing or a bad thing depending on the drug and its side effects

Myoclonus = PLMD used to be called nocturnal myoclonus, however most people do not use that term anymore as it is not accurate; myoclonus is still a condition, however it differs from RLS and PLMD

Paresthesia or dyesthesia = the varying sensations (creepy, crawly, electrical, etc.) we feel that "make" us move to get rid of the sensation

PLM (D,S, or W) = periodic limb movement; sometime called PLMD (disorder), PLMS (syndrome) or PLMW (while awake); it's the new term for nocturnal myoclonus and is sometimes used synonomously

Primary RLS = often obviously hereditary (though sometimes "idiopathic" meaning no known cause); this is when there is no other disease or disorder causing the RLS

Rebound = symptoms are more severe as the drug wears off

Secondary RLS = RLS that is caused by another condition, disease, disorder, etc. Most commonly this includes diabetes, kidney disease, pregnancy. It can also include celiac disease, fibromyalgia and many others (see another post later in this thread)

Taper = to stop a drug slowly by reducing the amount taken weekly. Different drugs are different tapering schedules and some people may need to go more slowly than the pharmeceutical company recommends

Titrate = to slowly increase the dose of a drug. This is done to prevent severe side effects and allow your body to get used to the drug

Tolerance = the drug stops working at the current dosage and more is needed to get the symptoms under control

Withdrawal = when stopping some drugs, as far as I know primarily opioids and DAs, some people can go through a period of several days to several weeks of severe RLS while the drug works out of the system. Good luck with this one as many doctors don't even know it occurs (ask me how I know :shock: )
Last edited by ViewsAskew on Wed Feb 21, 2007 9:21 pm, edited 3 times in total.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Postby ViewsAskew » Tue Jan 24, 2006 7:12 am

Thought I'd add my spin about the drugs we take. Before anyone reads this, realize that I am not a doctor! I wrote it to help when evaluating your doctor's choices for you and to supplement your knowledge so you can better participate in your care. This is not exactly what the algorithm says as I have concerns about taking many of these drugs over long time periods. Please go read the actual algorithm (link above in prior post).

These are my personal thoughts, based on my direct experiences, the experiences of many people posting here, and the reading I've done.

Benzos

-Benzos are best taken intermittently because of two things - strong physical dependence and excessive daytime sleepiness. The elderly should not take them at all. If you need daily help, please try something else first, then these if the other stuff doesn't work.

-Best benzo options are ones with a short half life (they leave your system more quickly and you aren't so tired or groggy.

Dopaminergics
-Current research says that dopamine agonists (DAs) no longer may be the first choice for daily WED if you need medication. They do work for the majority of people, but they come with a high risk of augmentation - at least 70% over time, and possibly higher.

- Make sure your doctor tests your serum ferritin and hemoglobin. If your ferritin is under 100, you have a tough choice to make. Current research indicates that serum ferritin should be at least 75 and preferably 100 before taking a dopamine agonist. The chances of augmentation are MUCH higher if ferritin is low.

-Some people get nausea - it sometimes goes away in a couple of weeks. If you are really sick, call your doctor right away. Some people have also managed the nausea by taking less of the drug, increasing it more slowly, taking it with food, chewing ginger, etc.

-Always take DAs at least an hour but preferably 90 minutes prior to the time your symptoms start. Taking them with food can lessen how well they work and taking them after symptoms start can mean waiting up to 3 hours for them to work.

-Pramipexole (Mirapex in the US) and ropinerole (Requip in the US) are the common choices. Pramipexole works for a longer period of time (6-8 hours) than ropinerole (4-6 hours), but ropinerole starts to work faster (60 minutes) than pramipexole (90-120 minutes).

-If one doesn't work initially, try the other and vice versa.

-Rotigotine (Neupro in the US), a transdermal patch, is currently available in the US, Canada, and Europe. It is thought that it will lessen the issue of augmentation.

-Switching from one to the other once you have been taking them for a long time, you are having trouble with the dose, or you are having augmentation or rebound is often quite hard to do. Many people have trouble. If you have trouble, you may have to use an opioid to help you get through the transition.

-Use carbidopa/levadopa (Sinemet in the US) only for intermittant RLS. Permax and Pergolide are associated with heart valve problems. Sinemet causes augmentation in at least 70% of patients when taken daily, however is very effective for intermittent use. Permax and Pergolide are very effective; unsure if you can still get them or not. If anyone takes them, I'd imagine an annual heart echo test would be necessary.

-Some people like splitting their dose - one dose a couple of hours before symptoms start and the other right at bed. They find that the drugs work longer than if taken all at one time, and they don't need to increase the dose.

-If you are taking a DA and your symptoms increase or start earlier in the day relatively suddenly, this could be augmentation. In my opinion, upping the dose may not the best choice, especially if you have already had to increase the dose, if the increase happened within the first year you were taking the DA, or if you have exceeded the doses recommended by the doctors who wrote "Clinical Management of Restless Legs Syndrome" (.25 mg of pramipexole and 1 mg of ropinerole). If your doctor wants you to do that, this may make the problem worse in the long run. There is a lot more about augmentation on this site.

-Some people use "drug holidays" to help keep the DAs effective. As soon as your DA becomes less effective (a sign of augmentation), immediately stop the drug you are taking (take a holiday from it) and switch to something else for two weeks. Some people can switch to another DA; other people switch to a different class of drugs. Then switch back to your original DA at the still low dose. Seems this works best when you do it before you have started to increase your doses and experience even the slightest amount of augmentation. Some people have taken the same low dose for years using this strategy.

-IMHO, the decision to take drugs should not made lightly, but you shouldn't suffer because you don't want to take drugs. I don't want to frighten anyone, but all of these drugs affect our central nervous systems and can cause many side effects. If you decide you need them (as many of us feel we do), be careful. Monitor yourself. If you start having problems, talk to your doctor immediately. If you have questions about them and what you should do, post here and ask questions.

General
-If you need a large amount of any one drug, it may be better to take less of it and add one or more other drugs together to make a drug cocktail.
If you are taking only one drug and the symptoms aren't under control, add something else. Many of these drugs work well when taken in small amounts together. The side effects tend to be less that way, too.

-All drugs can have side effects. Only you know what is tolerable. If you have to take one drug to counter the side effects of another drug, maybe there is a better choice for you.

-Almost all of these drugs can create physical dependence - your body gets used to them and stopping them cold-turkey is not a good idea! Times differ by drug and your physiology, but always find your doctor's recommendation for stopping them and stop them as slowly as needed.

-You know your body better than any doctor. If things aren't working, let the doctor know and stick to your guns!

Other drugs
-Gabapentin - Neurontin - was originally thought to work best for painful WED, not the electrical or creepy-crawly type. They currently use it with both types and it is now often the drug many doctors prescribe initially instead of a dopamine drug; anecdotal reports here seem to support that it definitely is helpful with the painful kind or with people who also have pain.

-pregabalin and gabapentin encarbil - Lyrica and Horizant in the US - are other options similar to gabapentin and are called alpha 2 delta drugs. As with all of these drugs, they can cause intense side effects. The drugs in this class also may cause suicidal ideation. It's not common, but if it happens, it can be very scary. Do watch for it and if you notice any such feelings, call your doctor immediately.

-Opioids, both low and high potency ones, often work well and carry a low risk of addiction, but will likely cause dependence along with a few nasty side effects. Be careful when using them, but don't let the hyperbole keep you from trying them if other drugs do not work.

Not taking drugs
-Treatment algorithms do not address lifestyle very much. There are many things you can do that can reduce your WED that do not require drugs. Food, caffeine, alcohol, iron supplements, exercise, supplements, regular sleep schedules, and more can help some people reduce symptoms.

-Even if you have to take drugs, lifestyle management can make a difference in how much you have to take, or how often you have to take them.
Last edited by ViewsAskew on Fri Jun 09, 2006 6:12 am, edited 3 times in total.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: A good place to start: Managing RLS

Postby ViewsAskew » Sat May 25, 2013 9:45 pm

The following questions are listed in the Clinical Management of Restless Legs Syndrome book, edition1. They are for doctors to use with patients to help separate WED from other disorders. My notes are listed beneath each question including the answer that would likely indicate WED.

Please note! This is for doctors to use with patients. There is a LOT more to all of this than what is included below. I've just tried to give you an idea of how the doctor would look at this.

1. Do you experience the urge to move?
Yes for WED
The urge to move is very compelling. It's not usually so much discomfort as it is an internal anxiety that often accompanies a sensation and makes you feel you MUST move. The sensation is what varies a lot - could be interpreted as electrical, painful, uncomfortable, and so on - that makes it hard to distinguish from other things or to tease out if there is another condition, too.

2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
Yes for WED
Other conditions may also make you feel you must move. The pain or discomfort of other problems may increase until you feel you have to move to make it stop, but the motion is a resettling or repositioning, not a need for constant motion. When the urge to move is present, with WED, you usually need to do more than resettle or reposition - you walk, run, stretch for several minutes, and so on.

3. Will the urge to move increase if you are in a confined (airplane seat for several hours, theatre seat and so on) position?
Yes for WED
With other problems, it doesn't matter if you are confined or not, the feeling is the same.

4. Do you have symptoms both sitting and lying?
Yes for WED (however, you may only experience them when lying because that is the only time you go to sleep - try to sleep in a chair and see if they start - they likely will if it's WED)
For other issues, you might only have symptoms in one or the other, as the position itself it what may make the symptoms manifest.

5. How long do you need to be at rest before your leg symptoms begin?
For WED, the issue is that is starts when resting or relaxing. It would start relatively soon after relaxing. The milder the case, the less likely it occurs when taking a short rest in a chair or watching an early TV show.
While some disorders are worse in the evening or when sitting in certain positions, it's related to the evening or that position, not because you are relaxing.

6. Do your symptoms only begin when your legs are in a specific posture?
This gets at rest and relaxation. If you are in a posture that keeps tension on your body, it might not happen. But, when relaxed and resting, it usually does.
Other issues, such as piriformis syndrome, would occur only in specific positions, such as when the nerve was pinched.

7. How quickly do you get relief when you start moving?
Can be relatively quickly with WED, but you may have to keep moving to keep it at bay. This is highly related to that urge to move - you move until the urge is gone.
With other disorders, you might get relief just by repositioning and you immediately feel better. Or, you might make it worse by moving.

8. Do your leg symptoms occur when you are walking?
For all but the most severe WED (including augmentation) or PLMW, this would be No for WED

9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
For all but the most severe WED (including augmentation) or PLMW, this would be No for WED

10. When are your symptoms worst?
With WED it's always worse at night. When it's not worse at night, something in addition or something else needs to be considered. In terms of activity, it's worse when at rest, when relaxing, when not engaged.
There is at least one other condition that is also worse at night. Others may occur at any time or may be worse during the day.

11. When you are symptoms least?
With WED it's always better in the early to mid morning, say starting at about 3 AM up until noon (somewhere in there) in terms of time of day. In terms of activity, it's better when busy, when engaged, when moving.
Other disorders do not usually follow this circadian pattern.

12. Do you find your symptoms are less in the morning?
Yes for WED
As above, most other disorders do not follow a circadian pattern of worst at night, best in the mid AM
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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How To FInd a Doctor

Postby ViewsAskew » Sun Nov 02, 2014 4:32 am

How To Find a Doctor
It's not always easy, at all, to find one. We've talked about it a lot in individual threads, but I thought I'd add a post here for everyone to see if they're searching for help.

First, the search box on this site works well. Type in your state, say, Mississippi, or large city close to you, say, Vancouver, and see if that gets you anywhere. You might find that someone mentioned a doctor in your state, country, province, etc.

Next, go to Google (or whatever you use to search on the internet). Search on Restless legs research [your state/province abbreviation] or restless legs research [full name state/province]. So, if you lived in New Hamshire, you'd type, "restless legs research new hampshire". Then try the same without the word research. This hopefully will find doctors who've published research about WED/RLS. You have to locate the article and read the author list to find that doctor is from your area.

If this doesn't help you in any way, you can try something that helped me. I went through my insurance list and listed all doctors who were close to me and who were sleep doctors, neurologists, pulmonologists (long shot, but since many treat apnea, they sometimes also know WED/RLS). I called each office and asked to speak to the doctor's nurse. I explained my situation and asked the nurse his or her thoughts about the doc - how many patients with WED did he/she see each week, was this a specialty of his/hers, and so on. I would always ask if the nurse would see this doc him or herself for my condition. They were amazingly honest with me.

Another idea is to see if there is a support group in your area. There aren't many, so it's not that likely you'll find one, but maybe you'll be lucky. Those folks likely know the good doctors.

Another idea is to travel. There are several doctors in the US and Canada who are well-known in the community, same in Europe. Dr Rye at Emory, Dr Silber at Mayo, Dr Earley (and others) at Johns Hopkins, Dr Buchfuhrer in southern California, Dr Trenkwalder in Germany, and several others. These doctors are all listed in the List Your Favorite Doctor thread. viewtopic.php?f=5&t=8115

If you can't find a specialist, order the book "Clinical Management of Restless Legs Syndrome" Second Edition, byt Lee, Buchfuhrer, Allen, and Hening. Take it to your favorite family doctors or primary care doctor. Use it together, along with literature from the WED Foundation, to manage your disease as best you and your doc can. In some ways, this can be better than trying to get a neurologist who isn't very knowledgeable to get up to speed - they tend to be very resistant because they think they know it all already (and they often know very little about current drugs and treatment).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 14650
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Primary and Secondary WED Medications

Postby ViewsAskew » Sun Jan 04, 2015 8:53 am

You may wonder what is available for you to take if you have decided pharmaceutical medications are right for you or are having difficulty and want to switch.

There are four current classes of medication as of January 2015. (For detailed information, please see the book, "Clinical Management of Restless Legs Syndrome" edition 2, by Lee, Buchfurher, Allen, and Hening.)

Doctors often start people either with a drug from the Dopaminergic or Anticonvulsant classes. To help people sleep, they may use drugs from the Sedative Hypnotics class. And, when most options have failed, they may use the Opioid class.

Dopaminergic Class
These are drugs that increase the dopamine in your brain. They are also used to treat Parkinson's Disease. Taking them does not mean we have Parkinson's or are more likely to get PD. Research has shown that it's very important to have higher ferritin levels when using drugs from this class. Ask for a serum ferritin test if your doctor does not suggest one. To use drugs from this class, your serum ferritin should be at least 100. Drugs from this class often eventually cause augmentation (the symptoms increase - either in intensity or start earlier). A high serum ferritin helps prevent or delay this.

  • Pramipexole (brand names are Mirapex, Mirapexin, Sifrol))
  • Ropinerole (brand names are Requip, Repreve, Ronirol, Adartrel)
  • Rotigitine - a patch - (brand name is Neupro)

There are several other dopamine agonist drugs, however some are no longer used for WED/RLS because of side effects. If your doctor wants you to take one of these other drugs, such as Sinemet (levo-carbidopa), cabergoline, apomorphone, lisuride, pribedil, or pergolide, ask why and find out more about the potential issues.

Anticonvulsant Class
This class includes several alpha-2-delta ligands and many others. This class is particularly good for helping people sleep and dealing with WED that is painful and for helping with anxiety that is associated with WED. Any of these drugs may cause suicidal behavior or ideation, so, if you take any of these medications, do watch for this as it can be very scary and dangerous! Also be aware of DRESS syndrome (ask your doctor and watch for skin rashes).

Alpha-2-delta ligands:
  • Gabapentin encarbil - a pro drug version of gabapentin (brand names Horizant, Regnite)
  • Pregabalin (brand names Lyrica and Nervalin)
  • Gabapentin (brand names Fanatrex, Gabarone, Gralise, Neurontin, Nupentin, Neogab)
The others sometimes used:
  • Carbazemine
  • Lamotrigine
  • Leveitracetam
  • Oxcarbazepine
  • Tiagabine
  • Topiramate
  • Valproic Acid
  • Zonisamide

Opioid Class
While opioids work for most of us, they do have side effects that can prevent their use and they are often the last resort in the doctor's view. While studies show we have fewer problems with tolerance and addiction that the non-WED folks, it's best to reserve these until other options are exhausted. If you have bad reactions to one opioid, you may be able to use others, so don't assume that if you can't use hydrocodone, for example, you can't use any. Opioids are the primary drug used to get a person through augmentation and often used for people who've tried many other drugs and have not had success.

Methadone, in the US, is often the primary opioid used if high potency opioids are needed. According to "Clinical Management of Restless Legs Syndrome," oxycodone is the drug most often used by WED/RLS expercts if methadone dose not work.

They are split into three groups - low, medium, and high potency.
Low:
Codeine
Meperidine, oral
Propoxyphene

Medium:
Hydrocodone
Tramadol
Tramadol extended release

High:
Fetanyl
Hydromorphone
levorphenol
Methadone
Morphine
Morphine (controlled release)
Oxycodone
Oxycodone (sustained release)
Oxymorphone
Oxymorphone (extended release)
Pentazocine

Sedative Hypnotics
These were the first drugs used for WED, but there is controversy as to whether they really resolve WED or just knock you out so you don't know about the movements. These drugs are used sparingly by RLS/WED experts for WED symptoms, but rather to treat the insomnia associated with WED. They also may help with the anxiety that many WED/RLS sufferers feel. There are two groups. Many specialists choose from the non-benzo group to start.

Benzodiazepines
Alprazolam
Clonazepam
Diazepam
Estazolam
Flurazepam
Lorazepam
Oxazepam
Quazepam
Temazepam
Triazolam

Non-benzodiazepines
Ramelteon
Eszopiclone
Zaleplon
Zolpidem
Zolpidem - slow release

Other Options
Again, referring to "Clinical Management of Restless Legs Syndrome," there are few other drugs that show promise in a clinical setting. Some of the drugs people have reported helpful when the primary drugs have not, include:
Amantadine
Botulinum toxin, type A
Clonidine
Propanolol

NOTE: Now that the experts know more about RLS/WED, they are discovering that some sufferers seems to have either both RLS/WED and neuropathy, or only neuropathy that has been confused as WED. If the primary classes do not work, consider the possibility that you have RLS AND something else, or only something else.


MORE TO COME...
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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