Tweaking the Treatment for Restless Legs

[DocJohn]

(Topix) Last Super Bowl, a TV commercial lauded the power of Requip , the first drug approved to treat restless leg syndrome, a condition whose signature feature is creepy-crawly leg sensations that interfere with ...Comment (http://www.topix.net/forum/link/thread?forum=med/psychiatry-and-neurology&artsig=1b1f939f68)

Read the full article... (http://topix.net/r/0sgB2ypc4UiiNybykHsA8fc8PJ4g5unBjFKldkE3YwMZDzQ1AX 1=2BAh1EBKSO77FQRPylzFCgDvil7bzVjeItMlqQEH=2F4mFhG Cumf=2BrtRA=2FG1j6oGzrDFsWLZAeEH=2FniJuT9lFxQey2wf 92YpAcfBfvw=3D=3D)

[heyjude5050]

Doc,
I have had severe RLS and PLM for as long as I can remember. Once I found a sleep disorder clinic I went through many drugs, alone and in combination to allow me to even lay down at night.:(
Before Requip was FDA approved for RLS my doc put me on it in combination with Klonipin. Requip alone has an extremely good outcome for many. :)
What a miracle!!!!!!!!! I take my meds one hour prior to bedtime and off I go to dreamland. I still move my legs a lot but there is no pain or waking up because of it.
Thank God for modern medicine. Standing up to sleep is something that some animals do........... not humans. :Zzzz:
Judy

[mrsD]

can help many with cramping/twitching or restless legs.

Potent dopamine agonists? YIKES...upset your whole system!
Many side effects, etc.

See my magnesium thread in Vitamin forum for details.;)

[Lara]

I have RLS.
Actually that article is quite interesting from my point of view. Apart from the fact that it references some of Roger Kurlan's work, I find it interesting for a few other reasons. Kurlan is a member of the Tourette Syndrome Association Medical Advisory Board. The acticle referenced speaks about 2 patients who found that they developed tolerance or declining response to the medications and suggestions about improving that. (as an aside, I see that Kurlan has also written a paper regarding "dopamine phobia" in patients who have Parkinson's Disease.)

I've personally never taken any pharmaceutical medications for my RLS although I can assure you that I've been tempted at times when I've wanted to jump of a cliff to stop the edginess and restlessness, and I mean that quite seriouslly. Because it sounds like a fairly painless syndrome because of the name, it's actually something quite dreadful and I have much empathy for anyone who has this problem.

I have a few minor motor tics. One major observation that I've found over the years since my childhood has been that my RLS is much worse at the times when I have no tics, and visa versa. Obviously related to dopamine dysregulation, but I'd hate to think what would happen if I started using a dopamine agonist for RLS or even a dopamine antagonist for the tics, although that wouldn't happen.

I have also noticed in the past few years though, that some doctors have treated patients who have debilitating tics with some low dose dopamine agonists although it isn't that common a practice.

J Gen Intern Med. 2006 Dec;21(12):C1-4.
Medication tolerance and augmentation in restless legs syndrome: the need for drug class rotation.

* Kurlan R,
* Richard IH,
* Deeley C.

Movement Disorders Unit, Department of Neurology, University of Rochester School of Medicine, Rochester, NY, USA.

Restless legs syndrome (RLS) is a common condition characterized by an unpleasant urge to move the legs that usually occurs at night and may interfere with sleep. The medications used most commonly to treat RLS include dopaminergic drugs (levodopa, dopamine agonists), benzodiazepines, and narcotic analgesics. We report the cases of 2 patients with RLS who illustrate the problems of tolerance (declining response over time) and augmentation (a worsening of symptoms due to ongoing treatment) that can complicate the pharmacotherapy of RLS. We discuss the optimal management of RLS and propose strategies to overcome tolerance and augmentation such as a rotational approach among agents from different classes.

PMID: 17105517 [PubMed - indexed for MEDLINE]

[Lara]

The truth is, some of the most common, most effective drugs, including ropinirole and pramipexole, which was recently approved to treat restless leg syndrome, may only work effectively for each person for a limited time," Kurlan said. "After that, this class of drugs � albeit the most-popular, effective, and the only one approved by the Food and Drug Administration for restless leg syndrome� has a regrettable tendency to turn traitor. The medicine can actually begin to worsen symptoms."

""Ultimately, there is hope for those who suffer from restless leg syndrome," Richard said. "But until there�s an effective drug we can use long term without interruption, for many patients hope lies in a merry-go-round of medications, not a single drug. Patients and physicians must be braced for this.
from Eurekalert
http://www.eurekalert.org/pub_releases/2006-12/uorm-ttt122006.php

[Curious]

hubby has both rls and plmd. ( periodic limb movement disorder)
our dr gave him an rx for requip. he didn't fill it.

my dad who has pd had horrible horrible experiences with it. :( it might work for some, but i can't reccomend it.

[Lara]

Hi Curious! still going here. ;)

http://www.blackwell-synergy.com/links/doi/10.1046/j.0962-1105.2003.00368.x/full/

Journal of Sleep Research
Volume 12 Issue 4 Page 343 - December 2003
doi:10.1046/j.0962-1105.2003.00368.x
Volume 12 Issue 4

Letter to the Editor
A preliminary look at the percentage of patients with Restless Legs Syndrome who also have Parkinson Disease, Essential Tremor or Tourette Syndrome in a single practice

Arthur S. Walters, Cheryl LeBrocq, Vandna Passi, Shivani Patel, Philip A. Hanna, Barry Cohen4 and Mary Wagner
_______

Lipinski, J. F., Sallee, F. R., Jackson, C. and Sethuraman, G. Dopamine agonist treatment of Tourette disorder in children: results of an open-label trial of pergolide. Mov. Disord., 1997, 12: 402–407.
_______

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15372602&query_hl=18
Mov Disord. 2004 Sep;19(9):1084-7.
Restless legs in Tourette syndrome.

Lesperance P, Djerroud N, Diaz Anzaldua A, Rouleau GA, Chouinard S, Richer F; Montreal Tourette Study Group.

Centre Hospitalier de l'Universite de Montreal, Montreal, Quebec, Canada.
_________

plenty more I have, but much of it is ADHD and/or TS with RLS stuff so not particularly related to original topic.

Anyone interested though might also look into the work of Drs. AS Walters and D Picchietti in PubMed. Also worth looking into the ferritin studies.

[Curious]

ty sweety for doing so much awesome research!!!!!

( how is the weather? send me some of your heat! it is gonna be a cold christmas here in texas! )

[Lara]

It's all old stuff I've saved. That's why I freaked when I lost my bookmarks when I downloaded the new Firefox 2.0. lol 10 years of hard reading and poof all gone in a second. Got them all back thank goodness!!!
It has been hot here, curious, but not as hot as usual. I just slept for 4 hours today... in the middle of the day. It's xmas eve tomorrow here and I had so much to do. (5.30pm now 23rd) We will get storms apparently on xmas day. Usually I cook hot dinner in the steaming humidty and sometimes heat in the high 90's and sometimes over 100. This year it's fairly mild so far but I'm over cooking hot turkey and dinners like that in the heat. I wish I could send some warm air up and over for you. My bones ache in the cold, so it would be so miserable.

[btw. I think it's appalling that companies can advertise medications on tv there. Can't here]

[heyjude5050]

hubby has both rls and plmd. ( periodic limb movement disorder)
our dr gave him an rx for requip. he didn't fill it.

my dad who has pd had horrible horrible experiences with it. :( it might work for some, but i can't reccomend it.

Curious,
I am sorry that the medication didn't work for your dad. It is no fun to live with the pain and discomfort. There are many meds out there and sometimes they need to be in combination. I hope he finds relief.
I don't know what I would do if I had to go back to the sleepless nights.
Judy



Have a Merry Christmas Curious!!!!!!!!!


http://bestsmileys.com/christmas3/18.gif

[AUGOLDMINER]

I use a gaba supplement (found at health food stores)during the day. and 300 mg gabapentin a hour before bed and that has worked for over a year with no problems. It even helps with my fibro as I do not get windup pain from the restless leg syndrome making my fibro worse.

Also i can't prove it but i think my sleep apnea is better when taking them.

[coyote]

I have RLS that is made worse by medications I have to take for depression.
My neuro prescribed Requip for the rls, and it made it unbelievably worse!
The doc said this is a rare occurance............
He also categorized the rls as a "cosmetic" problem". If he only knew how unpleasant it is. I agree with the person who said it can make you fell like jumping off a tall structure................
I also have a tic disorder (facial, arms, legs, clicking mouth noises), but he didn't say it was tourette's syndrome.
Both are driving me crazy at the moment.

[dorrie]

500 mg of magnesium oxide does the trick for me. My legs get crazy...I walk the sheets! It is the oddest feeling that I could describe..sort of like there is something on the inner lining of my legs wriggling around...It drives me:Crazy 2: crazy!!!

[coyote]

Thanks, I'll give it a try.

[dorrie]

It also helps with my leg cramps....but do not over do it..I do believe that milk of magnesia has magnesium oxide in it!!! If ya know what I mean:wink:

[coyote]

Goldminer,
I saw your post over in fibromyalgia.
I'm not familiar with gaba or gabapentin, but will look into it.

[KimS]

He also categorized the rls as a "cosmetic" problem"....

Well *that's* just rude.

Was just reading around this forum as I didn't realize it was here until tonight. Thought I might offer up a couple of things that might help.

I've seen back up stuff on MrsD was saying about the magnesium. I don't have it on hand but thought I would just give her comment a salute.

Also, since you mentioned that you're playing with GABA, I thought I'd mention, in case you didn't know, that magnesium also helps to improve mood: ADHD Mag. Supp. Impacts Behaviour (http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=9857546&dopt=AbstractPlus)

Also, if supplementing magnesium works for you then you may want to consider wondering why you are not absorbing enough magnesium in your diet? Are you ingesting things that are depleting your mag. stores (and maybe other things too?) For me, grain and coffee are big depleters (gluten grains are the worst offenders and coffee is next).

I don't eat gluten at all because of the many negative symptoms that arise when I ingest it. I limit coffee to the weekends but then I have to take supplements. Throughout the rest of the week I'm fine.

Dairy intolerance can be associated with enuresis and night leg pain/issues. Might want to look into that.

GABA supplementation is interesting. I've seen many studies on how to increase GABA using transcendental meditation and after using it as a therapy for my son who had behavioural issues (due to malabsorption of nutrients), it really helped him cope with stressful situations.

Actually, I said that kind of backwards, I started doing yoga with my son to help him gain control of his emotions. It worked really well (and I'm no yoga pro but it still worked) and I was wondering why... so I began to look up abstracts and it turns out that TM (transcendental meditation) is linked to higher GABA levels.

Here are some links that I thought were interesting:
http://en.wikipedia.org/wiki/GABA

McGill University (http://thebrain.mcgill.ca/flash/a/a_04/a_04_m/a_04_m_peu/a_04_m_peu.html)

Altering Biochemistry (http://www.behind-the-tm-facade.org/transcendental_meditation-tmresearch-biochemistry.htm)

Serum Hormonal Concentration following TM (http://www.ionchannels.org/showabstract.php?pmid=7666830)

Ketosis, GABA and TM (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10859661&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)

TM, Hormones and GABA (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7666830&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)


hth

[Skip]

It's all old stuff I've saved. That's why I freaked when I lost my bookmarks when I downloaded the new Firefox 2.0. lol 10 years of hard reading and poof all gone in a second. Got them all back thank goodness!!!
I'd be for backing all of them up! I have over 4,000 bookmarks that I share between IE and FF and I use a program to put them to and HTML page. Now to find one that can categorize better than the freebie I used!!

[Skip]

hubby has both rls and plmd. ( periodic limb movement disorder)
our dr gave him an rx for requip. he didn't fill it.

my dad who has pd had horrible horrible experiences with it. :( it might work for some, but i can't reccomend it.
I was diagnosed with PLMD during my first sleep study. They recommended Mirapex which did nothing for me. Then we tried klonopin which we changed, when on it I felt paralyzed and felt that I was awake all night. That was a scary time for me!

Finally my Doctor gave me Sinement (Carbidopa/Levodopa) and that fixed it. The really odd thing is that it took a while to get used to it. Waking up in the night was a hard thing to do as it seemed I had a screaming siren in the middle of my brain. That's lessened some today, but it seems to be still effective after about 4 years.

The one thing I have noticed is my legs sometimes feel 'itchy' so I'm beginning to think that I'm moving toward RLS that I didn't have before the Sinemet. I wonder if it's common to go from PLMD to RLS/PLMD?

I'm not sure if these treatments would last all night, but I've read individual recommendations of magnesium, hops, niacin with Vitamin C. One man used to say he drank an O'Doul's about an hour before bed for his, another ate Fava Beans. I can't remember the name of that email list, but I think it became or is tied to wemove.org (sp?). I'll have to start trying some of these.

[sassy]

I have been Requip for quite some time now. I am up to 2 mg per day, most days. I may talk to my neuro about rotating drugs and see what she has heard and noticed.

I had RLS before they had a name for it I swear. For me it is a familial thing on my Dad's side.

Can't say I have felt the need to jump off a tall building but I can honestly say I have entertained the idea of opening a vehicle door and trying to run beside the vehicle instead of just sitting there. And that has been while doing 70 down the expressway.

I'm glad they have put a name to it and have meds to help with the symptoms.

[Koala77]

Forgive me everyone for just noticing this thread, but I find what you've all been saying, very interesting.

........I had RLS before they had a name for it I swear. ......

I'm with you there Sassy. I seem to have had it forever and have never found anything to give relief.

I thank you for the Magnesium information "mrsd". I take Magnesium when I have bad cramps, so not every day. I didn't realise it would work for RLS as well, so thank you....I'll give it a try.


......It's all old stuff I've saved. That's why I freaked when I lost my bookmarks when I downloaded the new Firefox 2.0. lol 10 years of hard reading and poof all gone in a second. Got them all back thank goodness!!! .......................


I lost all mine as well when I upgraded Firefox. Unfortunately mine seem to be lost, or else I don't know how to retrieve them :(

[ddrsi]

Could U Share The Amounts Of Mag That Worked For U Please?

[Elissabetta]

I was talking to my new P-DR. about my diagnosis ---RLS, PLM, REM problems...and he said that RLS and PLM was the same?

Requip has helped tremendously -- but now having to increase it --- throw in a side dish of Fibromyalgia and uggghh!

But the Requip has been good --- if you haven't tried it for the above symptoms, please do so.
:rolleyes:

[Brokenfriend]

If I've had a active day these days,when I go to bed,the back of my legs start cramping,and I have to get up. This hurts allot. I also get nauseated sometimes. After the cramping of the back of a thigh,I'll go back to bed when it stops. Then sometimes the front of a thigh starts to cramp,and I have to get up again. It again hurts quit a bit. It makes me hop all around the room,followed by my groaning,and sometimes crying about it.

Does that sound like restless leg syndrome,or just leg spasms? BF

[tied]

i used to take sinemet for rls, now i just use life style changes. sinemet is a parkinsons drug.

the dose for magnesium should be adjusted as follows. take a calcium supplement in the eve, and magnesium in the am. start at lowest dose and increase it each day until stools get too loose, then back down to the previous days dose. do not take calcium and magnesium at the same time unless you are constipated.

rls for me is worse when sleeping on your back, so i sleep on my side. eat fruity stuff before noon. cut out sugar and refined white flour. wear natural cotton against your legs. fruits should be eaten raw, not cooked.

[billie]

Although Requip has been effective for my RLS for maybe 3-4 years now, the real relief came in the absence of severe nocturnal leg/foot cramping, which left me leaping from bed whether I wanted to or not. Magnesium, potassium, etc., did not seem to help this cramping, but Requip has, and continues to be effective for both the restlessness and cramping. I am grateful, but am also grateful for your information about rotating the meds. That sounds like an excellent idea! Thank You. billie