12 Million Can't Sleep, Can't Sit With Restless Legs Syndrome

[diamondgypsy]

12 Million Can't Sleep, Can't Sit With Restless Legs Syndrome
Drugs Like Requip and Mirapex Can Make Creepy Crawler Sensations Worse
By SUSAN DONALDSON JAMES

Jan. 9, 2007 — - When Richard Jefferson was 7 years old, his legs twitched so uncomfortably his parents would put them in ice packs to ease the creepy-crawly pain.

As he got older, the symptoms got worse: When in bed his legs flailed and woke him from sleep, and he couldn't sit through a movie or dinner at a restaurant.

"I used to beat them because I would rather have pain than restless legs," said Jefferson, now 62, of Rochester, N.Y. Once the retired assemblyman became so distressed he checked into the emergency room and received morphine. "The minute you sit down, it starts all over again. I've had to plan my life around it."

Jefferson -- like an estimated 12 million Americans -- suffers from restless legs syndrome, a neurological disorder characterized by an uncontrollable urge to move when at rest. Many more people go undiagnosed or misdiagnosed, according to the Restless Legs Foundation.

Sensations are often described as burning, creeping, tugging, or like insects crawling inside the legs. They can range from irritating to painful. Patients complain that they cannot sleep, and if the condition is left untreated, it can cause exhaustion and lead to social isolation.

For decades, Jefferson has searched to find the right medicine, and when doctors prescribed Requip (ropinirole) -- the drug most commonly prescribed for RLS -- he found relief. But only for six months. Then the treatment backfired.

In a recent article in the Journal of General Internal Medicine, neurologists at the University of Rochester Medical Center warned that drugs like Requip and a similar drug Mirapex (pramipexole) can actually make the symptoms worse.

These drugs -- so-called dopamine agonists -- have an "augmentation" effect -- that is, they can heighten the symptoms they are ostensibly treating. They act on dopamine receptors in the brain that help coordinate smooth movement.

These newer drugs, which are safer and have fewer side effects, have replaced dopamine drugs like Levodopa and Sinemet for treatment of RLS. The older drugs can cause intense movement, low blood pressure and nausea, and cause problems when used long-term.

Other drugs used for RLS, like narcotic painkillers and benzodiazepines, produce the opposite effect of the dopamine agonists. With long-term use, patients require higher doses, which produce side effects, including addiction.

Requip has historically been used to treat Parkinson's disease and Tourette's syndrome. But in the past year, the drug has been heavily marketed for treatment of RLS in direct-to-consumer advertising. One prominent ad for Requip aired during the Super Bowl last year.

"It's impossible to tell the whole story in a TV spot just a few seconds long," said Dr. Irene Richard, a movement disorder neurologist at Rochester Medical Center. "When patients come in asking about the treatment, doctors need to know that this is usually not a simple, single-pill solution, despite what they've seen on TV."

Rochester neurologists recommend doctors rotate patients through a variety of drugs to avoid augmentation.

"We think of the dopamine medicines as benign and controlled substances like Valium as addictive," Richard said. "But you have to be careful not to make the situation worse, and what is heralded as benign is not."

Requip is manufactured by GlaxoSmithKline, which saw a 34 percent increase in sales to about $78 million following its U.S. marketing launch for treatment of RLS, according to the company's 2005 annual review.

GlaxoSmithKline is aware of augmentation, according to Holly Russell, the director of product communication, and includes it in the Requip safety literature. She said the ads had increased awareness about RLS.

"Patients have told us their doctors did not appreciate their condition," Russell said. "They have suffered alone and blamed themselves for their symptoms."

Some physicians mistakenly attribute the RLS symptoms to nervousness, insomnia, stress, arthritis, muscle cramps or aging.

RLS occurs in both sexes, although the incidence may be slightly higher in women. The syndrome can begin in childhood, but it mostly hits in middle age or later. The severity of the disorder increases with age.

More than 80 percent of sufferers experience periodic limb movement disorder, which is characterized by involuntary leg twitching or jerking movements during sleep that typically occur every 10 to 60 seconds.

Jim Dunlap of Harvard, Mass., has experienced periodic limb movement disorder all his life, waking five or six times each night. The 87-year-old refuses treatment for his restless legs and spends sleepless hours working on his computer or walking around the house. A bad experience with benzodiazepines has put him off medications.

"I was so disoriented that I couldn't find my way back to bed from the bathroom," he said.

Richard Jefferson tried everything -- from quinine water to painkillers -- for his restless legs. Doctors eventually prescribed Requip, but it worked for only six to eight months.

When the doctors upped the dosage, it backfired. While being asked to lie still for an evaluation at Johns Hopkins medical center, "I was climbing the walls," said Jefferson.

Today Jefferson is being successfully treated with methadone, but doctors are not sure how long that will last.

"There's nothing left for me to try," said Jefferson, whose mother, two sisters and daughter also suffer from the condition.

Researchers are investigating the genetic component of the disease and hope to find soon the biological markers that will elevate the syndrome to a disease, according to Georgianna Bell, executive director of the Restless Legs Foundation.

Bell believes dopamine agonist drugs have provided relief for many patients, and that the well-documented augmentation effects do not occur in all cases.

"Yes, it's a problem, though it is not clear how common it is," Richard said. "The jury is still out, but it is an area of active interest."

Using drugs in different combinations seems to provide the best results for most people with RLS, she said. "What works for one may not work for another. And what works for you now may not work six months from now."

According to the Restless Legs Foundation, which has provided educational information on RLS for 15 years, many people with less severe symptoms find relief in quality of life changes, like giving up alcohol, caffeine at night and even letting up on exercise, which can trigger those leg sensations.

Still, many patients have had success with these new drugs. Nelly Cardinale of Webster, N.Y., who was diagnosed when she was 68, tried self-help methods until she was diagnosed with cancer in 2000 and underwent radiation and chemotherapy.

"It got to the point that I couldn't lie down and in the middle of the night -- my legs were jumping and I couldn't read or watch TV," Cardinale said. "I got so tired I would walk around crying. For a year, I couldn't get the rest I needed."

She is now being treated with Mirapex, a dopamine agonist like Requip that has cured -- at least temporarily -- all her symptoms.

"For the first time, I slept," Cardinale said. "I cried on the phone to the doctor, 'Thank you so much.' It's a miracle."

Copyright © 2007 ABC News Internet Ventures

http://abcnews.go.com/Health/story?i...C-RSSFeeds0312

[Ono]

I've been hearing a lot about this lately.

[exitwound]

Yeah, RLS can be a real nightmare. It's one of the specific conditions that I've included on my chronic pain forum ( http://chronicpain.xerces.com/ , just getting off the ground pretty much) and hope to make a dent in -- at least in terms of the quality of life of the people who suffer it.

These conditions, which affect tens of millions of Americans and countless others around the world, are shrugged off by many doctors because they don't think there is an easy pharmaceutical fix. And that isn't something docs like very much; there's no easy money in it. 

Which is all the more reason why sufferers have to band together and focus on quality of life -- rather than being at the mercy of people who are little better than pirates in terms of focus on profit above all other considerations -- certainly compassion seems to have little involvement!

[diamondgypsy]

Originally Posted by exitwound

Yeah, RLS can be a real nightmare. It's one of the specific conditions that I've included on my chronic pain forum ( http://chronicpain.xerces.com/ , just getting off the ground pretty much) and hope to make a dent in -- at least in terms of the quality of life of the people who suffer it.

These conditions, which affect tens of millions of Americans and countless others around the world, are shrugged off by many doctors because they don't think there is an easy pharmaceutical fix. And that isn't something docs like very much; there's no easy money in it.*

Which is all the more reason why sufferers have to band together and focus on quality of life -- rather than being at the mercy of people who are little better than pirates in terms of focus on profit above all other considerations -- certainly compassion seems to have little involvement!

My mother suffers from RLS and well, she says that it gets quite upsetting when you just cannot find a comfortable place to put your legs when trying to sleep or fall asleep.

[exitwound]

Originally Posted by diamondgypsy

My mother suffers from RLS and well, she says that it gets quite upsetting when you just cannot find a comfortable place to put your legs when trying to sleep or fall asleep.

I have enough trouble with sleep because of my high pain levels and the metabolic ups & downs that go with taking pain medication (plus the effects of my other meds, notably the Promethazine which helps greatly with nausea but tends to make me sleep too late -- which throws off my already-screwed sleep schedule).....RLS would drive me nuts.

I do have some insomnia problems even without medication or pain, and it might be described somewhat like mild RLS, but the last thing I need is another one of these diagnoses that doctors loathe to hear.

So I try not to focus too much on it; I already have enough "mysterious problems".

[WakeUp]

Treatment of RLS (Restless Legs Syndrome)

From Apply Now,
Your Guide to Sleep Disorders.
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Pramipexole Improves condition

Restless Legs Syndrome (RLS) is a neurological disorder characterized by an uncontrollable urge to move the legs. The motor restlessness worsens during the evening and night causing difficulty initiating and maintaining sleep. RLS is often unrecognized by sufferers or misdiagnosed by doctors.


Restless Legs Syndrome (RLS) is that creepy, crawly sensation that keeps you awake night after night as you fight the need to move your legs. This disorder often strikes people in the fifty-year-old and older age group, but others may have suffered with it since childhood.

RLS causes misery, sleepless nights, depression and sleep deprivation. Night after night, sufferers seek relief, moving their legs, having hot baths, cold baths, massage, pain relievers, and pacing the floor.

According to study results presented at the 9th International Congress of the Movement Disorder Society, a once-daily dose regimen of pramipexole improved Restless Legs Syndrome (RLS) symptoms for a 24-hour period and produced significant improvements in patients sleep.

Pramipexole, usually sold under the brand name Mirapex, is a new dopamine receptor agonist, a drug that bind to and activate dopamine receptors. Dopamine receptors are Cell-surface proteins that bind dopamine with high affinity and trigger intracellular changes influencing the behavior of cells. It's usually prescribed for Parkinson's disease.

This isn't the first of the drugs used for Parkinson's disease that has proved effective in the treatment of restless legs syndrome. Others include ropinirole and pergolide. Ropinarole (sold under the brand name Requip) and pergolide are dopamine type drugs.

RLS affects up to 10 percent of the adult population, but currently, there are no medications approved by the FDA for the treatment of RLS.

Restless legs syndrome usually worsens during the evening and night disrupting sleep. Although movement temporarily relieves symptoms, they return and the resulting sleep disruption can lead to sleep deprivation and excessive daytime sleepiness, causing problems in work and social situation.
Research into treatment for the condition. So far, the Parkinson type drugs hold the most promise.

Updated: May 7, 2005

http://sleepdisorders.about.com/od/m.../a/mirapex.htm

[WakeUp]

FDA Home Page | Search FDA Site | FDA A-Z Index | Contact FDA

FDA Talk Paper

T05-19
May 5, 2005
Media Inquiries: Susan Cruzan
301-827-6242
Consumer Inquiries: 888-INFO-FDA


FDA Approves Requip for Restless Legs Syndrome


The Food and Drug Administration has approved Requip (ropinirole) to treat moderate to severe Restless Legs Syndrome (RLS). The drug was first approved for Parkinson’s disease in 1997.

Restless Legs Syndrome is a condition that affects about ten percent of the population. The disorder is characterized by an urge to move the legs, usually accompanied by or caused by uncomfortable leg sensations. For most people with the condition, symptoms begin or worsen during periods of rest or inactivity and are partially or totally relieved by movement. Symptoms typically worsen or occur only in the evening or at night, and can disturb sleep.

Requip was found to be effective for RLS in three randomized, double-blind placebo controlled studies in adults diagnosed with moderate to severe RLS. The studies measured effectiveness of the drug using the International Restless Leg Syndrome Scale, a patient rated scale that measures different aspects of RLS including severity of muscle movement and discomfort, sleep disturbance, mood and overall effect on quality of life. The Clinical Global Impression-Global Improvement scale was also used. This is an investigator rated scoring of improvement following treatment. All three studies demonstrated a statistically significant difference between the treatment group receiving Requip and the group receiving placebo.

Common side effects of Requip reported in clinical trials include nausea, headache, and vomiting. The label for the drug will also include a caution that Requip has been associated with sedating effects, including somnolence (sleepiness), and the possibility of falling asleep while engaged in activities of daily living, including operation of a motor vehicle. Syncope (fainting) or symptomatic hypotension (low blood pressure) may occur, particularly during initial treatment or dosing.

####

http://www.fda.gov/bbs/topics/ANSWER.../ANS01356.html

[pixikill]

ive had restless legs syndrome. i got it as a side effect from chemo. its a spin out, and you simply cannot stop your legs from...like...'running' whilst you lay in bed.
its very debilitating.

[short_circuit]

If you all can not sleep try counting sheep.
http://www.spassmonkey.pwp.blueyonde...ing_sheep.html

[WakeUp]

Originally Posted by short_circuit

If you all can not sleep try counting sheep.
http://www.spassmonkey.pwp.blueyonde...ing_sheep.html

This reply is intended for SC and mild insomniacs.

I can imagine that RLS, even if mild - which many cases are not - would be quite disturbing, preventing people from getting REM sleep and a good rest. This ongoing sleep deprivation would simulate fibromyalgia and has been proven in research. (By the way, fibromyalgia is being successfully treated with both Mirapex and Requip. See above posts as well as the fibromyalgia thread.)

Here's a silly post for SC and all those with occasional sleep interruptions.

Whimsical ways of counting sheep

There's more than one way to skin a cat, and there's more than one way to count sheep. David Halperin read last month's story about Cumbrian shepherds having counted yan, tan, tethera, instead of one, two, three, and told us in an email that we should read a book called Ounce Dice Trice by Alastair Reid.

"The book lists different ways of counting to ten," he said. "Reid writes, 'If you get tired of counting one, two, three, make up your own numbers, as shepherds used to do when they had to count sheep day in, day out. You can try using these sets of words instead of numbers, when you have to count to ten.'

"There are 57 pages of this delightful nonsense, with equally delightful illustrations. My wife and I love it."

David, who lives in Urim, Israel, told us "I have been a member of Kibbutz Urim for the past 50 years, and so have had many -- and varied -- jobs over the decades: lathe operator, physics and mathematics teacher, factory worker, bookkeeper... But for the last few of them I was a musicologist at Tel-Aviv University until my retirement eight years ago."

In the book Ounce, Dice, Trice, now sadly out of print, Alastair Reid, a Scottish-born author, poet and translator turning 80 this year, cites these witty ways of counting to 10:

• Ounce, dice, trice, quartz, quince, sago, serpent, oxygen, nitrogen, denim.
• Instant, distant, tryst, catalyst, quest, sycamore, sophomore, oculist, novelist, dentist.
• Archery, butchery, treachery, taproom, tomb, sermon, cinnamon, apron, nunnery, density.
• Acreage, brokerage, cribbage, carthage, cage, sink, sentiment, ointment, nutmeg, doom.

He also suggests ways of naming the fingers, such as Tommy Thumbkins, Ettie Wilkson, Long Lauder (a distant relative of today's Laura Norder?), Davy Gravy, and Little Quee Quee Quee.

He suggests that times of day should include daypeep, dimity, dewfall and owlcry.

"And if someone tells you something you don't believe, look at him steadily and say FIRKYDOODLE, FUDGE, or QUOZ."



Warming to the word firkydoodle, we googled it. We found the word, spelt slightly differently, with this definition in The random pseudodictionary:

Firkytoodle, (n) Foreplay. Not my original word, but a wonderful word to say. Try it. Firkytoodle. Probably got it from Mrs. Byrne's Dictionary. Example: As in a song lyric: Momma don't 'low no firkytoodlin' 'round here.

ALASTAIR REID: "THIS ENIGMATIC MAN"

Alastair Reid is celebrated for his poetry, his peerless prose, his translations, and his life. In addition to some rare new material, Oases draws on the best of his work written over the years, thus giving a full picture of this enigmatic man.

"What drew me always to his writing was its portability: it required essentially no more than a notebook and a pencil, and it allowed me to own my own time, to travel light, to come to rest anywhere, a freedom I made full use of. I travelled however, mainly to find places to come to rest in, places to write in, oases"

Over the last thirty years Alastair Reid has shared his unique perspective in more than twenty books of poetry and prose and in his contributions as staff writer for The New Yorker: the politics and poetry of Borges and Neruda; football, in all its guises, burying treasure in Scotland; the life and personality of Robert Graves. Be the subject ordinary or extraordinary, he will transform it into his own, magnifying the particular, giving an unexpected dimension, turning a preconception on its head. Oases captures the best, the essence, of this restless man... It is also a celebration of life, his life.

- Oases - Prose and Poetry - Alastair Reid

* Last month, we wrote that Cumbrian shepherds used to count sheep by saying yan, tan, tethera, instead of one, two, three. Those and other Celtic words were also used for marking school attendance records, counting money and stitches in knitting, and in children's rhymes.

Links

• Sheep-scoring numbers
• Lincolnshire Shepherd (song)
• Wood engravings for H D Rawnsley, Yan, tyan, tethera (1987), Kathleen Lindsley
• "Alastair Reid is a word magician"
• Alastair Reid on the art of translation
• More than one way to skin a cat

http://www.bdb.co.za/shackle/article...l_nonsense.htm