My awful DA withdrawal: update

[Mikatrap]

Hi all,

During Sep, I progressively reduced my Neupro dose from 1mg to 0mg, under the supervision of my new neurologisit from Antwerp whose diagnosis is a very severe DAWS. My current medication is now 2x300mg Pregabaline, 2x100mg Tramadol ER, 1x0.5mg clonazepan, 37.5mg Venlafaxine.

When I totally stopped Neupro, I had an horrible week with painful RLS crises day and night + depression episodes. Then I started to have good days, during which I could go back to work for a few hours. I even had one 'normal' week during wich I went to work everyday, and my crises were minimal. I started to think that I was close to the end of the tunnel.

Still, it has been a week now that I'm back to square 1, with nearly constant crises that forces me to stay at home, suffering like hell. As usual, my crises are not "normal" RLS crises. I have kind of painful electrical jolts in the low back that makes my low back and legs shiver, and that makes me moan with every impulse. I spend most of my days in bed, trying to work on my laptop if I can. If it's too painful, I take one or two clonazepans to get knocked out. At night, I take a clonazepan, a tramadol and a pregabaline, and I sleep well. But when I wake up, a crisis start, or a crisis awakes me before waking up.

It has been 14 months now that I started my DA withdrawal and DAWS, and it has been pure torture all the way. I'm pretty fed up suffering like this. My neurologist says that I should fully recover, but that it will be a very slow process. On my side, I don't understand why I don't go back to my pre-DA baseline, which was a mild RLS during the first hours of the night that was under control with 150mg of pregabaline. During my crises, I tend to be depressed, and my feeling is that I have a rare type of permanent DAWS that I will never fully recover from, with uncurable damages to my brain. And I don't want to live the rest of my life mostly in my bed, suffering and moaning. This is no life.

[SueJohnson]

I am so sorry to hear that! I would suggest you ask your neurologist for a stronger opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

By the way Venlafaxine can make RLS worse in many. I would suggest Wellbutrin or trazodone.

[Joolsg]

I am sorry to hear you are suffering so badly.However, you have only been off DAs for a month. It can take several months for the dopamine receptors to settle and get used to the lack of 'feel good' dopamine.

Most people on here take several months to feel in a good place mentally.

It is a salutary tale for anyone considering Dopamine agonists.

I suggest you contact Dr Buchfuhrer in California and Dr Andy Berkowski via his website.Both have EXTENSIVE knowledge and experience of Dopamine agonists and have helped thousands of patients get off them. They will have a better idea of how long the depression and crises will last and whether your team should switch your medication.

Dr Buchfuhrer can be contacted on

[e-mail]

Dr Berkowski can be contacted at

[e-mail]

They will also express their opinion on venlafaxine which worsens RLS for patients. They may suggest trazodone or wellbutrin.

[Birdland]

I was suicidal for many, many months after DA withdrawal. Your brain has to relearn to produce dopamine again. Unfortunately that can take a long time.

[DicCarlson]

Your relative youth will eventually prevail! Hang in there! Venlafaxine is a nasty drug - beware of "discontinuation" syndrome when trying to get off it.