Side effects can be overwhelming.

[guthriedog]

Dear All, I can't tell you how much it means to read your stories and know that someone else is experiencing the exact same symptoms as I have. Reading your responses on different medications, iron, emotions everything. I have so much frustration because sounds, sights, smells etc. trigger those impulse activities that I don't want to do. I assume that it will be this way for my whole life and its not fair. These side effects never leave.

[Hidden]

It's so sad that you have to experience these symptoms, or anybody to experience them. It does help to know youre not alone.

I note that you write about impulse activities and side effects and therefore guess that you are referring to Mirapex.

Impulse Control Disorder (ICD) is sometimes a consequence of taking a dopamine agonist (DA) such as Mirapex.

In your last post, it was also identified that you are suffering augmentation which is also a consequence of taking a DA.

It saddens me too when I suffer something that will probably stay with me the rest of my life, it's daunting. For me the the thing that most fits into that category is my spinal degeneration.

However, as regards your RLS I wouldn't entirely surrender to the remainder of your life being dependent on mIrapex and enduring its consequences.

I see in your last post you wrote you've tried "most every thing available with no success". I read quite a few posts that say something similar, but also rarely say exactly what they've tried. I always think, how can you know you've tried everything, if you don't know what everything is?

You've only tried every thing you know, there may be other things you don't know. I can't honestly say if there is, if you don't say what you have tried. Giving more detail may help.

AS regards the mirapex, since it's causing you augmentation and posssibly an ICD, it seems the logical way of improving things is to wean off it.

Your symptoms will get worse at first, because of withdrawal effects. I believe they will also not imrpove as much as they can until you're fully off the mirapex.

It seesm quite a few people make the mistake of reducing/stopping a DA and finding that symptoms get worse, increase it or start it again. It is unfortunate that you have to break through the withdrawal "barrier" as it were, but it is better on the other side.

In the meantime, there are alternatives to dopamine agonists. The standard ones are the alpha 2 delta ligands, gabapentin or pregabalin, altrernatively an opiate.

As regards the ligands, it seems that sometimes people try one and expect immediate results and are also put off by initial side effects (which do NOT include augmentation or ICD). They don't give them enough time, several weeks, to start to work and for side effects to diminish. This is not giving them a chance.

Opiates can be effective for RLS.

I hope that offers sime hope fior you. You may not necessarily have to msuffer augmentaion and impulsiveness the rest of your life if you can manage to withdraw from mirapex.

Unfortunately, I have to warn you that you will find this diffcult. If you do have an ICD as a consequence of mirapex, then it's possible you may suffer DAWS (Dopamine Agonist Witdrawal Syndrome) when attempting to wean off mirapex.

You will need to consult a doctor then who can monitor your progress and watch out for any sign of DAWS.

[Nikwat in reply to Hidden]

Fabulous response. U seemed like hardened RLS sufferer like myself. I won't go on dopamine agonists again due to continual compulcivity and augmentation- even on thebworst dose. Dissaprears as soon as I got off them. Only opiods for me for now.

[Hidden in reply to Nikwat]

Great to hear your augmentation and compulsive disorder disappeared.

Glad you appreciate what I've written, a shame it isn't apparent if guthriedog has benefitted at all.

Sometimes I read on here members who have successfully got away from using DAs and got their life back. Unfortunately, I also read of others apparently locked into a life long struggle and I never know if they manage to get out of it.

[Nikwat in reply to Hidden]

Sorry about the typos in my last msg. It took probably 5-6yrs on certain medications for me to learn about augmentation and probably 8 years to realise that the behaviours I was exhibiting were compulsive! I won't even get into the side effects clonazepam gave me! The first g.p who put me on pramipraxole unknowingly kept increasing my dose having no idea about augmention. It was only when I saw a sleep specialist and she questioned my dose (I am not kidding her jaw dropped before my eyes) did I learn about these things. Having said that she had no alternative to give me. Doctors at a simply not educated enough and there is not enough funding for research. I often wish if I won the lottery I would.give it to science to research into this horrible condition.

[Hidden in reply to Nikwat]

That resonates with me.

I had mild RLS for decades with no medication. Then I had a course of a SSRI antidepressant!

My RLS became severe.

I was prescribed a high dose of a DA by a neurologist who, with hindsight, now appears ignorant.

The dose wasn't increased. If it had it would have been above the maximum licensed dose for RLS. Nonetheless after about 6 years, augmentation started.

For several years, my GP who never mentioned augmentation, just vaguely mentioned switching me to another DA.

Thanks to this forum I discovered an alternative, which I was already taking for a neuropathy and weaned off the DA.

I have only had mild symptoms for nearly a year.

I wonder how things might have been different if I'd never had the SSRI, or if, when I said to the doctor (I read it in my record), "I think the antidepressant is making my RLS worse" more approprriate treatment had been given.