restless leg syndrom

[sookie53]

hi I have had restless leg for over 20 yrs now, I was introduce to pramipexole 0.25 started with 1 at night time now up 3 a day 1 in the morning and 2 at night uste to work but now don't work anymore if have all day and night please help me because I am getting really depress I can't sleep anymore

[Madlegs1]

Please research

" augmentation "

on this site.

[Hidden]

+1 on madlegs1's suggestion. I have recently augmented myself and although the temptatoikn is toe go for an increase in drugs what you really need is to stop and change.

As well as looking into augmentation:

rlsfoundation.blogspot.com....

read about drugs that an be used to treat RLS such as opioids:

rlshelp.org

&

rls-uk.org

[Hidden]

I am so sorry that your drug Pramipexole is no longer working for you. I hate harping on this all the time, but the old saying of 'different strokes for different folks' I find to be definitely so accurate.

One of the puzzling things with RLS, (of which, unfortunately, thetr is many), is that all medications do not offer the same successful outcomes for all patients.

I have been using this med (which is marketed here in Australia under the name of Sifrol), and I could not, and would not, survive the torturous symptoms of RLS without it).

This drug offers me a 100% success rate in controlling ALL the symptoms of RLS.

I am truly so sorry that you do not experience the same success as I do.

The only negative thing I can say about Sifrol ... is it's hideous side effects, but I find that I can somewhat control said side effects (albeit sometimes very difficult to endure and win the battle), but I also know for a fact, that there is absolutely no way, whatsoever, that I could control, and live with, the symptoms of RLS.

And as for help with sleep .... I have recently come across a med that actually works (for me), and it is called here (once again in Oz) CICADIN). Another name on the pack is MELATONIN.

I have suffered from chronic RLS for over 60+ yrs and wasn't diagnosed unti the ripe old age of 48, so I tend to believe that I am somewhat of a rather expect when it comes to the treatment of this hideous disease.

That, of course, was before I joined this group

What you will learn here is absolutely outstanding.

Good luck and best wishes

[Neil46]

First of all I am sorry that your pramipexole has stopped working for you. The same thing happened to me and I had to slowly withdraw from taking it (You have been pointed towards info about the reasons for this and you will find many posts on this forum about peoples' experiences).

The good thing is that you will find kinder drugs than prami and hopefully you will get relief again from this cruel condition. Hang in there and life will get better.

There will be lots of advice and support for you to help you withdraw and move on.

Good Luck and Best Wishes

Neil

[Frea]

I am 72 and have had restless legs for about 35 years

Initially I was given clonazepam, when that no longer worked I saw a sleep,specialist who prescribed Siffrol 0.25at night.

Then it became 2x 0.25 atnigt,

then added a o.75 slow release in the afternoon

Now also take 2x lyrica @ 25mg so quite a cocktail in the last 5 yearsand still the augmenting increases

I would like to to quit siffrol, but my specialist almost certainly will suggest a higher dose ... so I feel like I am on a treadmill.

Has anyone suggestions about LDN... and how to reduce and come off siffrol and lyrica

Frea

[involuntarydancer in reply to Frea]

Hi Frea, you are quite correct to avoid increasing your dose of siffrol further. Your symptoms will continue to worsen and as you say it will be a treadmill. It sounds as though you already know more about your condition than your cconsultant.

Coming off siffrol is a very difficult process unfortunately and your Rls symptoms will go through the roof for a while with very little sleep possible. Typically it requires strong opiates to afford any relief during this difficult period.

I do not believe I have ever seen any case where LDN has been used to help with withdrawing from siffrol but I am aware of one person who believes that a higher dose of naltrexone (35 mg if I remember correctly so definitely NOT a low dose) completely reversed the effects of augmentation in siffrol. He was prescribed the naltrexone by his doctor as a weight loss aid but he noticed a difference in his siffrol requirement. It still worked for his Rls but he did not have the symptoms of augmentation and was able to reduce his dose. He also noted that his siffrol induced impulse control disorder completely abated. This suggests to me that naltrexone MAY have a roll to play in withdrawing from siffrol in the same way it does with opioids. It would have to be managed very carefully though as it would be inadvisable to withdraw too quickly and launching into a high dose of naltrexone would potentially have that effect.

I wonder if it would be worth emailing Dr Buchfuhrer at his website (rlshelp.org) about this.

[Frea in reply to involuntarydancer]

Thanks....I tried to +ontact Dr Buchfuhrer but unable to find his current website. Any ideas...? Frea

[involuntarydancer in reply to Frea]

As far as I recall you can get contact details on rlshelp.org. The most recent letter there was from mid December.

[LoisTonya]

I have gone up to one tablet at 6.30 pm and another at 7.30 pm and I am sleeping much better. It is controlling my legs but I’m so exhausted. I have done absolutely nothing today. Thinking of reducing the Pramexipole but dread the rls coming back