Restless Legs Syndrome (RLS)

[~lostgurl~]

Ok this post will be brief and I will elaborate later, but do any of you folk suffer from this? If so is it primary or secondary and what are you prescribed for it? My gurl has been tortured on and off with this illness for at least 18 months...... its like heroin withdrawal except with no end date. My gurl has just been prescribed carbamazepine, and also takes clonazepam, melatonin and propanolol which help. she wanted requip but apparantly only a specialist can give you that, and where I live it is only prescribed for parkinsons. I'm hoping this mix works for my gurl who has already had 2 night with no sleep and cant take another one. Any feedback on this illness or the meds prescribed for it would be much appreciated.

[AquafinaOrbit]

If I remember correctly, a friend of mine from Highschool was prescribe Clonazapam and Ambien.

[Metomni]

SWIM gets this, but not every single night so he has never gone into a doctor for it. He finds that Nyquil or Benadryl help on particularly bad nights though.

[~lostgurl~]

Ambien, nyquil and benadryl all make it worse. As do most sleeping pills and tricyclic antidepressants.

[Metomni]

Has your pet tried smoking some weed right before bed? That would be SWIM's only remaining guess. RLS really sucks though, hopefully SWIY finds something to at least manage it. Good luck.

[allyourbase]

swim "suffers" from this or something quite similar. that said, the medication offered for this causes far far worse than "restless legs", the whole "RLS" thing seems more to be a way to make money from marketing overly strong antichollinergics for a rather simple problem of fidgeting. if swiy really has such a problem with the fidgeting, perhaps try a more strenuous physical routine, or pick up any number of mental tricks to avoid those repetative movements.

[Jatelka]

Has your doctor excluded iron deficiency as a contributory factor? It's associated in about 20% of RLS

[~lostgurl~]

Yes iron deficiency has been ruled out. (well it was last time, she had more tests again today but she is doubtfall her problem lies here) This is a serious illness, it is not something a person "maybe" has, when you have it you know, when you dont sleep at all and your body jerks out every 30 seconds you feel like you are going mad. I think the meds my gurls Dr prescribed her are working but she also got the antidepressant venlafaxine / effexor which is counteracting the positive effects of the other drugs I think. There is a huge serotonin buzz going on (jaw clenching, eyes rolling etc) so she will try the meds again tomorrow. She has also been recommended a natural medication which comes in a powder kind of like muesli, some lady went on the radio talking about it, she was taking it for something else but noticed her RLS disappeared completley! Right now my gurl is desperate and will try anything. It is called LSA, brand is Health2000 Label reads: (Linseed, sunflower, almonds) Liver and bowel cleanser. High in fibre, protein and essential fatty acids esp omega 3. I guess I wont know what is actually working if it improves now, but really I dont care as long as it does. I'm pretty sure the illness is a result of my gurls previous meth abuse, but it has been so long she was really surprised when this hit her again. I'm very interested in anyone elses experience with this illness, especially if they think it was brought on by drug use (secondary not primary) Thanks

[allyourbase]

I wasnt trying to suggest its not serious, swim has just about all of those symptoms, swim in fact, could not sleep for the longest time unless one foot or the other was moving. for a long period took barbiturates and benzodiazapines for this and severe anxiety problems, but a time came whereupon using medications became pointless, as the side effects and constant sedation became too much to bear. as swim said, physical routine and certain simple tricks like going over one's monthly budget can greatly reduce both the conscious desire and the frequency of the "kick outs" as you called them :P those really are the worst, ask swim's ex girlfriend.

[Lunar Loops]

SWILL does not suffer from this, but does have a very close friend who does. She does not get it all of the time though. She has never taken any illegal drugs, but does smoke and drink alcohol (neither of which could be remotely considered excessive).

Bizarrely, she seems to suffer from it on a Sunday evening when she has just been sat relaxing, watching TV and to make matters more confusing, it seems to be worse during periods of stress in her life. So, in her case it seems to be the combination of having bad stress in conjunction with attempting to relax and rest. As it is more of an occasional thing, she has never consulted a doctor and does not take anything for it. I do know that it can be heriditory and SWILL's friend's mother also suffers from it. This is probably of no use to you at all LG, but SWILL is also intrigued by the condition. I presume LG has looked at sites such as www.rls.org ?

It is certainly no laughing matter when it happens.

[~lostgurl~]

Thanks, that does actually make sense and I'm not sure why cause science says there must be more to it than that..... but stress, plus the need to relax does result in this. Yes that messageboard I have spent a lot of time searching, there is a wealth of info there but nothing that directly relates drug use to RLS. Strange considering heroin addicts have RLS in the first 3 days of withdrawal.

[Santa]

Over 9 weeks ago Swim tapered and then switched from 70 mgs methadone to tramadol (50 mgs, three times a day) and the RLS are still driving her crazy today. (As are musclepains and sneezing).
Swim doesn't have the actual 'kicking around her' thing but more a general tingling, very annoying feeling in both legs, like legs being on a low voltage all the time. Especially at night or when trying to relax.
Now, Swim has been on methadone for decades and Swim knows she NEVER had this during her early stage of addiction (and thus withdrawals). Severe RLS started after being on methadone for about 15 years and manifested with first serious taper after a few years.
Every time Swim tapered beneath say 15 or 10 mgs methadone the RLS shit began.
Swim is convinced it has something to do with neurological changes in the brain and not so sure if it'll ever disappear completely..
Swim hasn't found any meds that work yet, except taking larger quantities of methadone/opiates again... or maybe a lot of benzo's.. but Swim doesn't want that.

[~lostgurl~]

Aww you poor thing, one of the most successful treatments for RLS is methadone at 20mgs, so if you are getting RLS coming off methadone I have no idea whether that would be primary or secondary RLS as when a person comes off heroin they usually experience it for 3-4 days, the time frame coming off methadone would be a lot longer I would imagine.

Carbamazepine is working for my gurl though it leaves her feeling like a zombie. My gurl also found out that alcohol can bring on severe RLS in those that suffer from the primary form of it and my gurl has been drinking heavily the last few months so she is not to happy about that. She thought she was cured as all symptoms had seemed to disappear months ago but now that it is back she is worried she has this for life.

[Santa]

Well, 20 mgs methadone is exactly the amount where symptoms disappeared in the past... so that could very well be true.
I'm now trying magnesium citrate, seems to help for some people, but I just started taking it. And yes, I noticed that alcohol will make it worse. swim has a few beers now and then but has to pay for it with sever RLS at bedtime..

Santa added 1 Minutes and 22 Seconds later...

I was talking about Swim ofcourse, Swim has a bit of a brainfog.

[~lostgurl~]

My gurl has managed to drink alcohol the last few days while still taking her meds and has not suffered severe rls, at the most it has been insomnia, and while still being annoying it can be lived with (at this level) she is hoping there is not a tolerance value with this med.

[~lostgurl~]

My gurl stopped her SSNRI and has kept taking her other meds, particularly carbamazapine which seems to take away hew symptoms most of the time but a few days ago she got this during the day and she usually only gets it at night. Her spasms are more in the torso area and are difficult to disguise with other body movements (as it is when it is primarily in the legs). So for the most part she is happy with how these meds are working, but when its not it is torture, she wouldn't wish this on her worst enemy. She thinks slowing down her drinking is making it worse (strangely enough) but she is hoping it goes away altogether if she can stop drinking.

[DavidJS]

Sugar consumption is a major cause of RLS.

>Bizarrely, she seems to suffer from it on a Sunday evening when she has just been sat relaxing, watching TV and to make matters more confusing, it seems to be worse during periods of stress in her life. <

[~lostgurl~]

Well I have to say, alcohol defiantly makes RLS worse, my gurl stopped drinking for a week and had no signs of RLS, then she binged in the weekend and had a terrible time Sunday night. It has been an incentive for her to stop drinking though.

[DavidJS]

There's a link between RLS and Hypoglycemia. Does your girlfriend have any joints that are extra flexible, does she have any white scars, and does she have an irritable bowel or irregular movements?

It sounds like it is sugar that's causing it, if the RLS disappeared when she stopped drinking. But, why is sugar affecting her?

[~lostgurl~]

No, no, no and not really. I'm not convinced it is sugar though, as my gurl usually drinks gin and sprite zero, so there would not be significant rise or drop in glucose levels when she was drinking or when she stopped drinking. She eats food with sugar in it quite regularly. Also I don't think alcohol was "causing" her RLS, but it was worsening something that she already has. She is much more convinced it is to do with dopamine.

[frankz81]

quinine is also used in low doses to treat rls and leg cramping....
i did a detox off methadone 2 months ago and had quinine while there and on discharge....
when my legs get very irratible i take some quinine, although doesnt make the symptoms dissapear it does seem to ease the restless legs...
taking too much quinine is poisonous tho..
also after discharge, the first few nights i was really bad and restless, quinine did not help so for a couple of nights a smoked weed until i basically knocked myself out.i would smoke constantly for about 2 hours, yes 2 hours before i couldnt keep my eyes open any longer...

but yeah, a combo of quinine and clonodine may be worth a shot

[Burnt]

your girl should stop taking all drugs. completely. the combination of drugs being consumed on and off can certainly complicate this issue. then take a serious look at your diet. eating sprite zero isn't going to make a difference. do you drink coffee or intake large amounts of caffeine? if so stop.

realize the pharmaceutical industry uses the symptoms known as restless leg syndrome (which really is not a disease on its own but the manifestation of some other condition) to market strong prescription drugs that were originally intended for other purposes. these drugs have lots of side effects and when in combination it can get evern worse and make your condition much more complicated and will not be solved by trying more and more combinations and different doses.

also eventually after getting off this medication which at first may make your symptoms worse your on quite a cocktail but if you really want to succeed SWIm really thinks its necessary. then you should do try some natural herbal sedatives after taking a break from drugs and trying to have a more balanced diet. strong prescription drugs are not needed to combat such a syndrome. SWIM drinks lavendar tea whenever SWIM feels like falling asleep quick, its sedative and anxiolytic. it really works for SWIM and SWIMs girl. there are other herbs that could help too if you would like to take this approach just ask SWIM has a lot of resources for such information. however it will probably not work unless your girl gets off these medications.

[marek_gen]

if it is a sleaping problem you schould fee if someone can perscribe dormicum

[MrG]

Dopamine appears to be a factor in RLS. GHB may be responsible for the few cases where narcoleptics on Xyrem suffer from RLS. Apparently it went away after they ceased using GHB.

http://linkinghub.elsevier.com/retri...89945706001882
γ-Hydroxybutyrate (GHB) has re-emerged as a major treatment for narcolepsy. As dopaminergic transmission is clearly involved in the pathophysiology of restless legs syndrome (RLS), and GHB reduces dopamine release, one may hypothesize that RLS may occur in narcolepsy in the presence of GHB. We report a case of narcolepsy with a severe occurrence of typical RLS with GHB, symptoms never previously experienced by the subject and reversible after withdrawal.


Here's a reference to some treatments you might not have considered:

http://www.cafepharma.com/boards/sho...d.php?t=226239
Finally, Pramipexole (Mirapex® and Sifrol®) is currently a medication indicated for treating Parkinson's disease and restless leg syndrome, and is sometimes also used off-label for treatment of certain types of headache. The drug affects the hippocampus and is also seen as aiding users in reaching that highly coveted stage 4 of sleep. Dr. Holman said the drug is appealing for fibromyalgia symptoms due to the relatively low incidence of nausea and dizziness as well as its renal metabolism characteristics.

Reputation Comments on this post:

Very interesting, thank you for this!

[ShawnD]

Originally Posted by MrG

Dopamine appears to be a factor in RLS.

Indeed. On wiki it's literally the first sentence under causes:
"Most research on the disease mechanism of restless legs syndrome has focused on the dopamine and iron system.[2] [3] These hypotheses are based on the observation that levodopa and iron can be used to treat RLS...."

l-dopa might be hard to get since that's generally reserved for people with parkinson's disease, but you could probably try Wellbutrin (bupropion) instead. Wellbutrin is a dopamine/noradrenaline reuptake inhibitor used for depression.

I can't say Wellbutrin would actually work, but it's worth trying. A few research studies have shown that it increases dopamine enough to interfere with slow wave sleep, and force rem sleep to happen sooner, and stay in rem for longer periods of time. RLS and sleep stages are not really related, but this just shows that it's presumably working on the correct neurotransmitter.
bupropion and sleep stages
bupropion and dopamine