Starting Out - Links and Information updated 12/13/05

[ViewsAskew]

I was putting together some information for my family when it occurred to me that other people here might like the same. So, here are lots of links I've found. I'm sure there are more; we can always add them to this thread as we find them. Happy reading!

Ruby and Nadia and Lyndarae put together a similar one; they've got some different ones than I do, so make sure you go here, too: http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94 That thread and this one are great places to start to get questions answered.

The Basics of RLS
Do you have RLS - the criteria.
http://www.neuro.jhmi.edu/rls/edu.htm or http://beta.restlesslegs.org/what_is_rls/

European site that Corrie found - great info about studies and the populations that get RLS
http://www.jr2.ox.ac.uk/bandolier/booth/booths/RLS.html

Very specific information about RLS and other movement disorders; you can also get to the MDVU (for medical professionals - has great info!) from this site or go there directly
http://www.wemove.org/rls/
http://www.mdvu.org/library/disease/rls/

Specific info on many sleep disorders - good section on PLMD
http://www.emedicinehealth.com/collections/CO1667.asp

Johns Hopkins RLS site. It includes a list of medical studies they are doing.
http://www.neuro.jhmi.edu/rls/

Explanation of how RLS occurs in the brain from a Nightwalkers article.
http://www.restlesslegs.org/nwalkers/2003.Summer.pdf

Ekbom Support site from the UK
http://www.ekbom.org.uk/welcome.htm

More of the same but some new info:
http://www.journalsleep.org/Editorials2 ... %20papers'

Slides from a presentation with some interesting info
http://www.siumed.edu/medicine/pulmonology/facpres/RestlessLegsSyndromePPT.pdf

Dr David Rye's slides from the 2004 RLS conference in Long Beach
http://www.rls.org/documents/DavidRye-B ... ory%20RLS'

Older, but very thorough article by Early, Allen, etc.
http://www.aasmnet.org/PDF/RLSReview.pd ... ia%20PLMD'

New! Australian RLS site - lots of info including patient recommended doctor list!
http://www.rls.org.au/

Treating RLS: for you and your doctor

Mayo Clinic Algorithm - helps your doc find best treatment for you
http://www.mayoclinicproceedings.com/in ... D=744&UID=

So. Cal. support group: comprehensive RLS med information, pages of letters answered by doctor on how to deal with RLS, links to other sites, etc.
http://www.rlshelp.org/rlshomepage.htm

Primarily discusses ropinerole, but has very good facts and compares RLS to other disorders
http://www.medunet.info/members/efns/ro ... e-04.shtml

Good general article by Richard Allen; good to give to primary care doc
http://www.healthology.com/focus_article.asp?b=earthlink&f=sleep_disorders&c=restlesslegs&spg=FIA

Good general article; written for primary care doc audience
http://www.aafp.org/afp/20000701/108.html

Alternative and Personal Views of RLS
Jill Gunzel's RLS rebel site for non-drug ways to deal with RLS
http://members.cox.net/gunzel/index.html

Interesting theory on hypoglycemia and how it may exacerbate RLS:
http://www.diagnose-me.com/cond/C18558.html#G859

Quality of Life statements by our members - go here to add your own.
http://bb.rls.org/viewtopic.php?t=536

Drugs to Avoid
Fascinating article on anti-depressants, specifically about difficulty of stopping Paxil (very scary)
http://www.citypages.com/databank/23/11 ... e10788.asp

A list of medicines to avoid (that worsen RLS):
http://bb.rls.org/viewtopic.php?t=252

Secondary RLS or RLS with other Medical Conditions

Pregnancy and RLS (from this site)
http://www.rls.org/pdf/pregnancy_and_rl ... methadone'

Specifics of PLMD
PLM information and treatment options
http://www.emedicine.com/neuro/topic523.htm

Studies and Study Results and Information
One of our own members is completing an online study. If you haven't, go there to add your information.
http://bb.rls.org/viewtopic.php?t=553

Short article on the relationship between ADHD and RLS
http://www.websciences.org/cftemplate/N ... D=20044863

Article on donating blood and RLS
http://www.mayoclinicproceedings.com/in ... D=251&UID=

Ferritin, transferrin, and CFS iron study done in Japan
http://www.websciences.org/cftemplate/N ... D=20045211

Results from some pilot trial info on other medication
http://www.mdvu.org/emove/article.asp?ID=688

MRI shows low iron in brains of people with haemochromatosis
http://www.websciences.org/cftemplate/N ... D=20046523

Other Interesting Info
Place to check drug interactions
http://www.caremark.com/wps/portal/_s.155/3344



*updated 12/13/05 by the author

[cornelia]

Thank you, Ann, for the links. Of course I knew a few but not all. Next week I am going to take the one about the iron deficiency slides to my neuro. I think he will be pleased to have the latest info.

Corrie

[ViewsAskew]

I'm adding a little dictionary of terms. 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 caused by certain drugs. Symptoms usually
revert to the prior level when the drug is stopped

DA = dopamine agonist 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 = the amount of iron stores in your body; a much more
important indicator than your hemoglobin; 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

Paresthesia or dyesthesia = the varying sensations that we feel that
we call RLS

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

Rebound = symptoms are more severe as the drug wears off.

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 sever 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 a week 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 (-: )



Ann

[ViewsAskew]

Hey, I just added a new link. Johns Hopkins now has an RLS site! There were several research studies listed on it. If anyone lived near Maryland and you can participate, it would be such a good thing.

Ann

[cornelia]

Thanks, Ann, I just read it.
I found 2 things interesting: the research-programs and the fact that it said that tolerance to opiates seems to be less in patients with RLS than in patients with chronic pain. The last item I will talk about with my neuro, because he is very concerned with the toleranceproblem.

Corrie

[ViewsAskew]

Just added a link to the end about ferritin, transferrin and CFS iron levels. It was a study done in Japan.

[ViewsAskew]

Just added another link to the end about the future of treatment - also gives good synopsis of current treatment and the algorithm.

[cornelia]

Thanks for the link, Ann, that is really a coincidence! I was looking for these particular slides last night for the booklett I am going to write and couldn't find it anymore under "National Meeting"!

Corrie

[ViewsAskew]

Here are some new links to some abstracts with some interesting info (too bad it doesn't include the whole article!):

Neurocognitive effects of sleep deprivation
http://www.websciences.org/cftemplate/N ... D=20045368

This might explain why some of us get diagnosed with psych problem instead of RLS:
http://www.websciences.org/cftemplate/N ... D=20045373

Sleep related headache syndrome
http://www.websciences.org/cftemplate/N ... D=20045377

Sleep and pain
http://www.websciences.org/cftemplate/N ... D=20045378

[ViewsAskew]

In a moment of hopelessness (actually several days of it) I decided to research other treatment options. In doing so, I found quite a few ongoing research studies in the US. Of course, it helps to live close by, but some of these might be worth travelling to!

http://clinicaltrials.gov/ct/search;jse ... A?term=RLS

http://www.neuro.jhmi.edu/BrainWaves/Wi ... rials.html

http://www.neuro.jhmi.edu/rls/research.htm

http://www.centerwatch.com/patient/studies/cat430.html

Hope someone is near one of these and can participate.

Ann

[Guest]

Hi Ann, is it that bad again? I am so sorry.

For the first time in years I have a cocktail that works for me at the moment. 1mg Requip and 1200 mg Neurontin and a little bit Tramadol for daytime RLS. My biggest problem is loss of energy but I couldn't care less as long as the horrible RLS is at a distance.

What I want to say actually is that Sepracor is working on a new type of med. Please read, maybe this will work in the future. It only takes so long until a med is on the market!

Corrie

SEP-226330 -- SEP-226330 is a norepinephrine and dopamine reuptake inhibitor (NDRI). Sepracor initiated a Phase II study of SEP-226330 for the treatment of restless legs syndrome in the fourth quarter of 2004. This compound may have advantages over currently used dopamine agonists in the treatment of restless legs syndrome, which is a movement disorder that is reported to afflict approximately 16 percent of the U.S. adult population.(3) Sepracor is also conducting preclinical evaluations of SEP-226330 as a potential novel mechanistic approach for the treatment of Parkinson's disease.

[ViewsAskew]

I've just found this link that lists many study abstracts. There were some interesting results - some of these studies are from almost 20 years ago!

http://www.ethicswatch.com/Articles/Lit ... s/RLS.html

Corrie, thanks for the info on the new drug. I will be waiting for it! How do you like the tramadol? I can't say the the Propoxyphene has been too helpful, but the doctor prescibed the lower dose and only 1 damn capsule a day! That's not going to do much for severe RLS. . . I am determined to stop the Mirapex, even if only for a few days, so I may just take what I want (using the rlshelp.org dosing info) and run through the bottle in short order! At least I'll find out what happens when I stop the Mirapex.

Ann

[cornelia]

Ann, I like your links! I just had a quick look at the last one and I intend to study it better. Interesting. I like to read about research; I think it gives me some hope for the future.

As for the Tramadol: for me it is OK for RLS, not for PLMW. But the limb movements are more "friendly feeling". I think I have been on it for 4 years now in daytime. As you know it gives me some energy as fringe benefit. I use it every day, without a holiday. I take the drops, so I am able to play with the dose. I take anything between 37.5 mg to 62.5 mg a day. When I upped the dose of Neurontin, I could lower the dose of Tramadol.

I think that when you stop the Mirapex altogether, the RLS should become very, very severe for a few days and then settle down again. When I started seeing my neuro I had to stop 0.40 mg Permax and start with the lowest dose of Requip 0.25 mg. It was horrible. Of course I hoped that my RLS would have become better, but not at all. Within 2 months I was on 1 mg. Only when almost a year later Neurontin was added, the RLS became more managable.
So I would be surprised if you can cope without Mirapex.
Well, I'm sure you let us know.

Good luck with your ongoing battle. Take care.

Corrie

[ViewsAskew]

I started this because I didn't see Lyndarae's original post. I never intended to be the only caretaker of it. Should anyone find anything and want to share, please add it to her post or to this one.

[TeaLSea]

Wow, thanks for the resources, Ann!