Dopamine agonists and their aftermath - A Survey

[Parminter]

Hello All

I have been off dopamine agonists for more than two years now, thanks to methadone and buprenorphine. Both were - and are - a blessing (insofar as any drugs could be called such), as many of you will know.

But I would like to know how many of us feel, even long after quitting dopamine agonists, that things have never been the same and that we have suffered some degree of damage to the delicate dopamine system, resulting in a lowered quality of life. It can be hard to recall just how good life was before dopamine agonists because many of us were taking them for so long.

But I do know that my before-drugs life, even with RLS and sleep loss every night, was superior to the life I experience now.

When my blood levels of the opioids dip, many of DAWS symptoms arrive. I thought I had escaped it, but I am no longer sure.

I had thought that the opioids caused the symptoms I was suffering. Now I believe that the opioids are acting as a cover-up.

Typical DAWS symptoms include anxiety, panic attacks, agoraphobia, depression, dysphoria, fatigue and pain. Full-blown DAWS always occurs amongst those who suffered Impulse Control Disorders while on the drug.

It seems to me that there must be a long scale between full recovery from these monstrous drugs and long-lasting DAWS. (Or everlasting DAWS).

How many of us feel that we are somewhere on this scale? I think that there are many of us, judging by comments made over the years.

I attach a link to a site that allows patients on psychoactive drugs - which dopamine agonists most certainly are - to tell their stories and to comment.

It is a litany of sadness that makes one weep. And wonder, yet again, how on earth is this drug still being prescribed for RLS without doctors asking searching questions.

rxisk.org/sos-dopamine-agon...

May I have your input, please?

All best and thank you, Parminter

[Hidden]

Thanls for this.

Yes I've submitted a comment.

[Felicity21]

Hi Parminter,

You are telling me you have been going through very bad DAWS and have replaced your DA’s with Methadone and Buprenorphine (Opioids which to me would be classified as equivalent to high dose morphine). I believe when using these drugs, Opioids Blood levels need very careful monitoring for addiction, personality disorders, problems of swallowing, absorption, digestion etc.

Hearing you and reading all the posts on the site you forwarded the link to, I am afraid I don’t agree with your suggestion that DA’s and DAWS are to be blamed for your lower quality of life. I think the reason life was better before DA’s is because we weren’t suffering from RLS! I don’t understand why you simply don’t go back on the DA’s.

At the advice of this forum I too slowly came off the DA’s and went onto Gabapentin. It was a big mistake and I suffered 3 months of sleepless nights.

I have now been back on a DA for more than a year (I take Prolonged Release 0.26 mg of Mirapex) and combine it with 2 co-dydramol (10/500) plus 1 high strength Senokot to prevent constipation and 0.5 mg of Clonazepam, I sleep every night like a log for 8-9 hours. And feel good in myself. The Codeine in the Co-dydramol I take (20 mg) is equivalent to low dose morphine. I would be much more worried about the morphine equivalent content of Methadone and Buprenorphine than staying on a Dopamine Agonist drug which does what it says on the label : stimulate the dopamine in my brain which helps my Restless Legs. Augmentation occurs but only if you increase the dose which I don’t do. I keep it at the low level and it helps.

I wish you all the best.

[senders in reply to Felicity21]

DAs are HORRIBLE maybe not for everyone but for those that experienced their side effects they are the devil!!!

[Kickfree in reply to Felicity21]

Sorry I am 2 years late to respond. I liked your story. Mine is the same.

[Felicity21 in reply to Kickfree]

Hi Kickfree, that is amazing to hear a reply to my comments after 2 years. I am still on the same regime and in spite of getting restless most evenings, I get a good night’s sleep most nights. I love a hot bath beforehand which relaxes me. I just don’t understand people who go on these strong drugs whereas DA’s have been known to help people for many years. It is important not to increase the dose to avoid augmentation. Take care and good luck!