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  • AADD Moderators: swilow | Vagabond696

my RLS story...

well clonazapam did nothing unless i took 4mg or more.
even then it was very faint.
after the clonazapam i told the dr and they gave me temazepam lol, obviously did nothing at all.
i have an appointment with a neurologist in april, would be sooner but i cant afford to see a private specialist.

that was 2 weeks ago, since then my lack of sleep has caused me to call in sick to the very few shifts i was offered at my job and now am forced to go to centrelink for help.
never ceases to amaze me that doctors are worried about giving me something that may be addictive, but they are happy to watch my life turn to shit and sign papers to give me 6 months on an illness payment.

this is honestly ruining my life and just want some escape from the symptoms until i see the specialist.
its now been 2 years and 60+ different doctors i've seen with over 25 dif meds to treat the symptoms or the cause and as yet xanax is the only thing that gives me some relief but have only been prescribed once lol.

ill have a healthcare card soon which should open up the doctors i see and medication i can afford, so hopefully i can find someone somewhere that can help me soon.
 
well as i posted in the other thread, doctors are willing to hand out antipsychotics over benzos it seems lol
got a script for 25mg seroquel, im hoping it doesnt make my legs worse as it seems to fuck with all the right (or wrong) chemicals and areas in my brain to do so, but seeing as other drugs that are used to treat RLS only made mine worse, maybe this is going to be different!
they gave it out easy as pie
 
Misk, there is a very real probability of antipsychotics worsening your RLS.

The two possible causes of RLS most focused on in research are dopamine and iron; antipsychotics acts as dopamine antagonists and through this can cause movement disorders, including RLS.
 
i know, i do alot of reading before taking any medication.
a side effect of all meds used to treat restless leg syndrome can be restlessless, akathisia, dyskinesia and other various conditions related to messing with the levels and/or receptors of dopamine, gaba and norepinephrine.
kinson (sinemet) made things 11ty times worse all day everyday. even now after not taking them for a week or so i still feel the increased symptoms from the sinemet.

unfortunately, this is apparently a better option according to the GPs who have such hate towards benzos asif they were writing me a script for heroin and meth to be booted at the same time.

the seroquel at doses of 25-50mg works a treat for getting me to sleep.
anything over 100mg and its aboslute hell, but at least i can sleep the next morning.
so will take me a bit to get the dosage right.
i just wish doctors werent so single minded, benzos have their place, and when the only alternative known to a standard GP is an antipsycotic in my case, i have lost all of the little faith i did have in a normal GP.

it shits me cause i know xanax works, and yes it has side effects and physical addiction, but so has EVERY other medication they have given me.
 
Last edited:
^ Just because it's listed as a side effect doesn't mean you will experience it. In some cases, certain listed side effects are extremely rare but because someone, somewhere, in some situation experienced it they have to add it to the list.

Excuse me if this has already been covered in the thread, but could you list all the medications and treatments you have tried so far?

Also, GP's are under pressure not to prescribe certain drugs for long term use. They have to answer to somebody, and if in their opinion you could face possible harms from benzodiazepine use in the long run worse then harm from the RLS, they won't use those.
 
yeah i do understand where they are coming from, but im talking about 2 months at the most, enough time to get me to the specialist without my life falling apart.
i also edited the post above to include some more info re. side effects, but i have experienced increased symptoms from every med i have tried to treat it with.

specifically for RLS:
sifrol - relieved some of the aching pain, but the burning sensation was 10 times worse
neurontin - have to have at least 2000mg at which point i get bad side effects
kinson - all symptoms increased more than 10 times, plus nausea, vomiting, vertigo etc
clonazapam - did nothing
temazepam - nothing
xanax - relieved symptoms and helped me sleep
panadeine forte - did nothing at all
dothep (Dosulepin) - did nothing at all, not even make me sleepy
zoloft - gave me insomnia like crazy
pristiq - as above plus went a bit spastic

for sleep:
zolpidem - ok ay getting me to sleep, but would wake alot
zopiclone - same as above
diazapam - would need 20-30mg to feel any effect (even before i started taking benzos)
serequel - 25-50mg will make me sleep but any more and symptoms increase

cant remember the others, was one or two more anti anxiety or anti depressants in there, but also a few other things to help me sleep.
anything for sleep may make me drowsy, but the pain and sensation in my legs is so great i will remain awake, which results in doing things im not aware of as my brain is asleep somewhat but my bodys not.

this is ontop of months on vitamin suppliments (including vit D, various vit B, magnesium, calcium and iron) even though my blood tests came back as fine in all areas.
tried various OTC anti cramp and sleep aids with no change at all.

so now as i have exhausted the conventional meds used for RLS (there are a few others but all work on the same concept) there is nothing else i can think of to try.
as i told the DR yesterday, im willing to try anything you're happy to prescribe that wont make you think im a junky after a fix, i just want help.

i have also tried adjusting diet (i already dont drink coffee or alcohol) but have tried dropping back on sugar, or anything else that may antagonize the symptoms with no relief.
im a healthy person and exersize frequently, so im just running out of ideas.
i dont want to waist my appointment with the neurologist so im trying to rule out everthing i can now to help with that
 
^ You have tried a lot already, and good idea with ruling things out before the neurology appointment.

Well everything I know of for treatment of RLS you've already gone there... perhaps there is some underlying mechanism at work here?

It's unfortunate you have to wait so long until your appointment with the neurologist, hopefully once you get there it is worthwhile. :)
 
thanks for the support mate, means alot when i get the 'dont look at me' look when i go to the doctor lol.

right now im concentrating on relief of symptoms so i can sleep and lead a normal life, the cause will be a tough one to crack as it could be alot of very different and very scary conditions :(
i would have loved to be a part of a recent sleep test that was done at a uni but was not able to attend.

i will keep updating this thread with info as i have it, i have a feeling it has a link with my previous recreational drug use combined with with the fact it runs in a family line, so it may be more and more common among younger people.
 
i am in this very same hole, so are a lot of people.
as soon as i mention RLS a doctor switches right on and pretty much rips you away from what you are talking about, some start talking about diets and exercise, or valerian root or something totally useless like that. they automatically think your dr shoppin
 
reprieve (Ropinirole, Requip, Ropark, Adartrel, Ropinotergotirole) is a dopamine receptor agonist, similar to sifrol, the main difference in terms of how it effects dopamine is that requip has the strongest effect on the D4 receptor, where as sifrol acs most on D3.

from what i was told if sifrol didnt work, no other receptor agonist will.
they will most likely aid with things like involuntary movements moreso than the aching burning pain that i have.

unfortunately, only a specialist will know anything about them as normal GPs dont read wikipedia apparently.
 
lagger said:
i am in this very same hole, so are a lot of people.
as soon as i mention RLS a doctor switches right on and pretty much rips you away from what you are talking about, some start talking about diets and exercise, or valerian root or something totally useless like that. they automatically think your dr shoppin
Click to expand...

lol ive doctor shopped for 2 years, only one had the thought to send me to a sleep specialist after 2 months of no solid sleep.
99.9% of the ones i talk to just say they are being honest and dont know anything bout it so therefor cant assist with the symptoms.

what medications have you tried?
what symptoms do you have and when do you get them?
being able to identify the symptoms helps alot in terms of identifying where the chemical imbalance is.
 
reprieve (Ropinirole, Requip, Ropark, Adartrel, Ropinotergotirole) is a dopamine receptor agonist, similar to sifrol, the main difference in terms of how it effects dopamine is that requip has the strongest effect on the D4 receptor, where as sifrol acs most on D3.

from what i was told if sifrol didnt work, no other receptor agonist will.
they will most likely aid with things like involuntary movements moreso than the aching burning pain that i have.

unfortunately, only a specialist will know anything about them as normal GPs dont read wikipedia apparently.
Click to expand...

Actually, both of them act mainly on D3 but also have effects on D2, D4 and D5. There aren't many strong D1 agonists in use at all, those that have been researched usually have severe side effects.

I'd be a bit put off if my doctor was treating my condition based on Wikipedia...
 
rivotril used to help sleep a bit but its a benzo drug so it wont work after a while and its not the kind of medication you can just stop and start cycle every few weeks. benzos were one of the things gthat fucked my health so much so i dont want that again plus no amount of time off benzos seems to fix the tolerance
 
Mr Blonde said:
Actually, both of them act mainly on D3 but also have effects on D2, D4 and D5. There aren't many strong D1 agonists in use at all, those that have been researched usually have severe side effects.

I'd be a bit put off if my doctor was treating my condition based on Wikipedia...
Click to expand...


sorry. it was more of a point that the doctors arent keen to research it at all lol
i understand they act on all D1-D5 but from the reading ive done D3 and D4 were the main receptors of either drug respectively.
either way, would be interesting to see if the slight differences in which receptors are effected helped with a certain persons RLS over another
 
Whatever options you consider do look at the efficacy of homeopathy before you waste any money on it. Also look at the way it is supposed to have its effect and ask yourself if that sounds rational.
 
Homeopathy = biggest scam ever.

Making a killing off placebo.
we looked at this in tafe and not only are the ingredients of most of the products would not help what the box says, they don't actually exist in the "medicine"
 
^ I can't stand homeopathy, would never recommend it to anyone.

Yeah the ingredients are supposed to be things that would cause the symptoms you have, and then diluted to the point where there is nothing in there.

Though some homeopathic products then claim to be based on substances that actually could help your symptoms, e.g. homeopathic melatonin. Wouldn't that be a homeopathic stimulant by the rules they use for everything else?

It is illogical and I have no idea how those companies are still in business.
 
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