I am tired to much.

[Barrylegs]

I have been on pramipexole for over 15 years, also tramadole,I have only 3 hours sleep a night if I am lucky, I get RLS every night can not go out if I can not move about it’s hell, if I keep very busy it’s not to bad and on the move, same time every day it starts, any body like this.

[Hasyl]

Yes I am and have been for years ,I don't think docs take it seriously. They never investigat to see if it is anything else

[Hidden in reply to Hasyl]

Please read my reply to Barrylegs. I think it applies to you too.

[YodaDog]

Hi. What is your medication regime i.e. dosages and timings? Have you tried any other RLS medications? Have you had a comprehensive blood panel for iron and other relevant things done? Do you take any other medications or supplements for other conditions that you have? The more information you provide us with, the more that members may be able to help you. Do you avoid known triggers, such as alcohol, caffeine and nicotine?

[Barrylegs in reply to YodaDog]

Hi, I am taking a number of tablets, pramipexole, tramadol, iron tablets, magnesium, turmeric, magnesium cream for legs, I do fine that is if I keep busy in the day time it helps but night time or if I sit down during the day it starts, thanks again.

[YodaDog in reply to Barrylegs]

Ok, you didn't answer my final question about avoiding known triggers such as caffeine, alcohol and nicotine.

Apart from that all I would add is take note of everything Manerva said, he is very knowledgeable about the issue. Good luck.

[Barrylegs in reply to YodaDog]

Hi again I do not drink coffee, tea, and do not smoke, and I do not drink any alcohol, just water, very sad person I am , luck is what I need, thank you.

[Hidden]

You have done well to stay on pramipexole for that long. I only managed 9 years. It would have been less if I'd been told of the long term consequences of taking a dopamine agonist (DA) such as pramipexole. The neurologist that originally prescribed it and the GP I discussed it with never mentioned the risks and in fact, I don't think my GP knew!

Not only that, but when I was having the issues you're now having, my GP hadn't a clue what to do.

You are suffering from the classic long term consequences of taking a DA, that is loss of efficacy and insomnia.

Not only may the drug be failing to relieve your symptoms, it may in fact be making them worse.

This effect is known as "augmentation". This is a well documented risk of taking a DA. It's now becoming accepted that DAs should not be the first medicines tried for RLS because of this.

Augmentation is where the effect of the DA reverses. You may be experiencing a worsening of your symptoms at night. Augmentation can progress to where the symptoms spread from your legs to other parts of your body. They can start to occur earlier in the day and can happen quicker. That is, the time between staying still and symptoms starting is less and less.

I suffered augmentation and what you described sounds very familiar. I had chronic insomnia, even if I was able to get to skeep I'd wake after only 2 - 3 hours. I'd get symptoms, twitching in legs, arms, shoulders and abdomen, almost any time of day and within seconds of sitting still. It was daily and unrelenting.

You may not have reached that yet, but that's where the pramipexole is taking you.

The solution is simple. Unfortunately, it's not easy.

The accepted way of dealing with augmentation is to stop taking the pramipexole.

You must NOT stop taking it suddenly, this is not only very risky but will cause horrendous withdrawal effects. It is better to reduce the DA in small steps and as slowly as possible. I had to reduce from 0.75mg, it took me 10 months. You may be able to at least halve that.

I reduced by 44ug every four weeks, ( half a 0.125mg tablet).

BEFORE you start reducing the DA though is a good idea to start on an alternative RLS medication. The main accepted alternatives to DAs are called alpha 2 ligands, that is either gabapentin or pregabalin.

If you start on one of these at least 4 weeks before reducing the prami it will help reduce symptoms to some extent and will help minimise withdrawal effects, although even with slow withdrawal, you will still get these. I took gabapentin, started on 300mg and built it up to 900mg.

Withdrawal effects are usually a temporary worsening of symptoms. In some cases, not so common, withdrawal can cause some mental health issues.

The worst time is when you finally stop. Some people find an opiate helps at that time, if they can get one. Some people find taking a benzodiazepine or "Z" drug helps at that time, because you may be sleepless. Some people take a couple of weeks off work then.

I haven't taken pramipexole now for about 8 months. I now take 600mg gabapentin at night and sleep well and hardly ever have any RLS symptoms. My RLS has gone from very severe to mild.

You may have to convince your doctor of this however. Your doctor may know, but it's not common at all for GPs (PCPs) to know about augmentation and what to do about it. They like to increase the dose or switch to another DA, i.e. ropinirole or rotigotine. That's really not going to help.long term.

They CAN prescribe gabapentin or pregabalin however, they are recognised as being effective for RLS, although they're not licensed for it, they are recommended.

They do not cause augmentation and aren't known to lose efficacy.

Here's a link to an overview of the treatment of RLS written by a professor of neurology and RLS specialist. Note the sections on augmentation and on the alpha 2 delta ligands

uptodate.com/contents/treat...

Read the "pinned" posts on this site about augmentation.

If you say you live in the UK, I can link you to UK relevant national RLS guidelines which clearly identify augmentation and clearly state alpha 2 ligands are recommended for RLS.

You may need to take this information to your doctor.

These are my suggestions based on my own experience. Many others on this forum have experienced the same problems with pramipexole or the other DAs.

You don't have to continue with your worsening symptoms and insomnia. It's caused by the pramipexole.

[Shaft1952]

I am on pramipexole & pregablin & codiene at night, I can't take tramadol, having been unwell recently my RLS is playing up big time. Hoping it will settle soon. Also have pregablin at lunchtime & teatime, but wondering if I am heading for augmentation again. I hope you can get it settled soon shaft52

[Marmaset]

Hi Barrylegs. What you are going through needs to be sorted as soon as possible as, apart from your RLS, sleep deprivation can make you very ill and unable to function - I know, I've been there! I can only speak personally, and what has given me so much relief with my RLS that I now sleep through the night, was to have my ferritin levels checked (this is very important for RLS sufferers), and this is done by a blood test. I was on a low dosage of Pramipexole, but am now on the highest dose, which I take with Co-codemol and Gabapentin. Just a word of warning about Tramadol, which at one time I was taking. This is a very addicitive medication and in itself causes its own problems, as I found I needed to take more and more to stop the feelings of withdrawal. I had to get help from a Drug Councillor to come off it and it was the worst experience of my life and took some time for me to be free of the withdrawal symptom. That's when I went on to Co-Codemol, which was recommended by a Neurologist. Back to your RLS, I can't stress enough how important it is your ferritin levels are checked, and if you try out the medication I am using, I hope you find it as helpful to you and it is to me. It's bliss to know that when I go to bed I will get a good night's sleep. Good Luck.

[Barrylegs in reply to Marmaset]

Thanks Marmaset, it is a problem for me, all the tablets I take, my family life because it all ways starts when we are out with friends, usually early evening on a bad day all the time In the back ground on edge, when I get really tired it’s bad, it is hard to explain to people what it’s like unless you have RLS, sorry to go on, again thanks for the chat.

[Marmaset in reply to Barrylegs]

Hi Again. I truly understand everything you say about how you feel, that is why it is so important that you get the right medication - I'm proof of the fact that RLS can be controlled and not interfere with your sleep, and you can almost forget you have it. I hope you go to your Dr armed with whatever knowledge you have learned from the replied chats, and get the ball rolling to get you the relief you so badly need. You are so right, unless you have experienced RLS, you have no idea just how dreadful and intrusive the condition is. Again, good luck.