Dopamine agonist withdrawal

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
Moderator
Posts: 15741
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dopamine agonist withdrawal

Postby ViewsAskew » Tue Aug 04, 2015 11:32 pm

A slow taper doesn't do it, either. I did that. And, still went through H E L L when I stopped. I was able to reduce from .75 to .125 mg, though, and keep my level of symptoms about the same. But, stopping is stopping. It just is plain hard.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aipulu
Posts: 59
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Dopamine agonist withdrawal

Postby Aipulu » Wed Aug 05, 2015 1:20 pm

I spent two months trying to get off Mirapex. I usedd the opioid-like Ultram although I would have preferred to use a real opioid. I needed a very high dose of Ultram once I got below 0. 25 mg of Mirapex (I was on 1.0 mg at the start). Finally added back in 0.5 mg og Ropinirole, which worked. And then shifted too the 1.0 mg Neuro patch. I can't I imagine trying to go cold turkey for 5 or more days. I don't think I could handle it or that it would work for me. I envy those that can do this.

JimmyLegs44
Posts: 89
Joined: Thu Oct 01, 2009 5:24 am

Re: Dopamine agonist withdrawal

Postby JimmyLegs44 » Wed Aug 05, 2015 4:55 pm

ViewsAskew wrote:A slow taper doesn't do it, either. I did that. And, still went through H E L L when I stopped. I was able to reduce from .75 to .125 mg, though, and keep my level of symptoms about the same. But, stopping is stopping. It just is plain hard.

Good to know...I won't put myself thru this then. You'd think if it would've worked, then they would have included it as an option in the augmentation treatment algorithm. I will wait for my appointment with Dr. Silber at Mayo. Still waiting for a call back after my PCP's referral.
The best way out is always through. - Robert Frost

ViewsAskew
Moderator
Posts: 15741
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dopamine agonist withdrawal

Postby ViewsAskew » Thu Aug 06, 2015 10:57 pm

I've known Dr B for a long time and he answers questions for me pretty regularly - sometimes when someone here says something, I'll run it by him to see what he thinks. He's told me in the past that nothing really helps, in his opinion, except an opioid. He seems to feel that it's needless suffering that doesn't really help anyway. In his posts on the SoCal RLS website, for years he's said the same thing - do not taper, stop it fast, use an opioid, then find another drug. Al other combos just create a hellish period.

But, then Dr Earley (and others at JH) come and say that you need to suffer because it's the only way to reset receptors. I'm guessing that both of THEM are guessing, lol :-). I doubt there is research on it because there isn't much research about these kinds of things in general. Both may be pulling from other disciplines.

Either way, we definitely have a split in the medical community on this.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

JimmyLegs44
Posts: 89
Joined: Thu Oct 01, 2009 5:24 am

Re: Dopamine agonist withdrawal

Postby JimmyLegs44 » Fri Aug 07, 2015 1:50 pm

Yes, I suspect you are right, they are both guessing, likely based on their respective extensive clinical experiences. To me it makes sense to be on the opioid for the first 2-3 weeks, to get through the worst of it, and THEN do a 10-day washout, BUT only if the opioid prescribed is sufficient to cover withdrawal symptoms. If not, then don't bother messing around with the opioid, as it will likely only create more problems (nausea, constipation, etc.).

If after tapering off the opioids you are back to square one because, as Drs. Earley and Allen hypothesize, the opioid simply kept with withdrawal symptoms at bay, then you really haven't lost anything other than a few weeks of dealing with side effects of the opioid. It seems to me you have much more to gain than to lose with this approach.

After coming off the opioid (assuming Dr. Silber is amenable), I'm planning a 90-day washout period. I want to make sure I've given my dopamine receptors sufficient time to heal/reset before deciding if I will go back on medication. I realize it may not be a pleasant 90 days, but as a 45 year-old, I'm looking at it as if I have 30-40 more years to live (God willing), and 90 days is a drop in the bucket, so I'm willing to sacrifice quality of life now for hopefully an improved quality of life for the rest of my time on earth. If after the 90 days I still have severe daily RLS and require medication, at least I will know it's probably the real deal and not lingering DA withdrawal symptoms.
The best way out is always through. - Robert Frost

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Dopamine agonist withdrawal

Postby Orrel » Fri Aug 07, 2015 4:21 pm

Jimmy: You make a very good point about the 90-day washout period. It's difficult to tell
when your baseline RLS has been reached and 90 days should do it. I have been off the DA
for 22 days (with clonazepam but nothing else). Augmentation is a hard beast to conquer
and doesn't want to let go, as I am discovering. There is no sense of going on meds if
what you are experiencing is lingering augmentation and not baseline RLS.

ViewsAskew
Moderator
Posts: 15741
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dopamine agonist withdrawal

Postby ViewsAskew » Fri Aug 07, 2015 9:51 pm

The 90 day washout sounds excellent. I spent a few years off of DAs before I went back and never stopped the opioids. I have no idea if that kept my symptoms elevated permanently or not!

I have been increasing the days I take a DA in the past month or so. Just the other day, I was up to to 3 weeks before I took a break from it - and no augmentation. I originally augmented in less than 2 weeks - but my serum ferritin was 8. No one knew, at that time, that you needed to have it much higher. After two infusions, it's in the mid 100s, so I thought I might succeed doing this. I do NOT like the side effects, but if I can get to at least a month (6-8 weeks would be better) and do not augment, then I can stop the opioid, go through withdrawal and reset THOSE receptors. At that point, I may try to stop the DA, too, as you are, and take nothing and see just how bad it is. We'll see.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aipulu
Posts: 59
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Dopamine agonist withdrawal

Postby Aipulu » Sat Aug 08, 2015 12:18 am

As far as I can tell from a brief search on the internet, opioids do not act on the dopamine neurotransmitter system. So it seems to me that you can reset your dopamine receptors while on an opioid. I worry about making my baseline symptoms worse were I to go on a 90 day washout, without any meds. 20 years ago I went undiagnosed with RLS for 9 months, during which my symptoms got much worse, spreading to the lower arms.

ViewsAskew
Moderator
Posts: 15741
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dopamine agonist withdrawal

Postby ViewsAskew » Sat Aug 08, 2015 7:21 am

We used to have a pharmacist in our merry band of RLSers. I often wish he were still here....but then again, that might be why he left!

The internet is a fickle place, isn't it...I just found the opposite. Ah, I do wish Josh were here :-=).

"Opioids target the brain's reward system by flooding the circuit with dopamine. Dopamine is a neurotransmitter present in regions of the brain that regulate movement, emotion, cognition, motivation, and feelings of pleasure. The overstimulation of this system, which rewards our natural behaviors, produces the euphoric effects sought by people who misuse drugs and teaches them to repeat the behavior."

and

"This euphoric effect also appears to involve another mechanism in which the GABA-inhibitory interneurons of the ventral tegmental area come into play. By attaching to their mu receptors, exogenous opioids reduce the amount of GABA released (see animation). Normally, GABA reduces the amount of dopamine released in the nucleus accumbens. By inhibiting this inhibitor, the opiates ultimately increase the amount of dopamine produced and the amount of pleasure felt."

and - pictures!
http://neurogenesis.com/neuroscience/ho ... the-brain/

BUT - even though this appears to happen, when a person takes an opioid, they get through the augmentation. Not sure why! But it doesn't make it worse.

Hmmm
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aipulu
Posts: 59
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Dopamine agonist withdrawal

Postby Aipulu » Sat Aug 08, 2015 11:25 am

Here is what I came up with when searching for "opiates" and "neurotransmitters:"

"Opioids act by attaching to specific proteins called opioid receptors, which are found in the brain, spinal cord, gastrointestinal tract, and other organs in the body. When these drugs attach to their receptors, they reduce the perception of pain."

Thanks ViewsAskew for pointing out that opiates flood the brain with dopamine.

It's over my head to figure out what this all means for resetting dopamine receptors. Wish the pharmacist was still active here.

Yankiwi
Posts: 386
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Dopamine agonist withdrawal

Postby Yankiwi » Sun Aug 09, 2015 4:58 am

It's way over my head too but the animated graphic was clear, thanks for posting the link.

Aipulu
Posts: 59
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Dopamine agonist withdrawal

Postby Aipulu » Sun Aug 09, 2015 7:46 pm

The graphics on that link were very informative in explaining how opiates impact dopamine availability and receptors. And very interesting how they think that GABA decreases the amount of dopamine made available. Research seems to say that WED affects both the dopamine and gaba systems so I take both.

ViewsAskew
Moderator
Posts: 15741
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dopamine agonist withdrawal

Postby ViewsAskew » Mon Aug 10, 2015 3:25 am

I don't always take both, but sometimes do. The gabapentin helps me get a deeper sleep - likely related to the glutamate issues they found in the research.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aipulu
Posts: 59
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Dopamine agonist withdrawal

Postby Aipulu » Mon Aug 10, 2015 9:05 am

Yeah, I didn't hardly dream on just Mirapex. In a eep test I got almost no stage 3 and 4 sleep. When I added 300 mg of gabapentin, I started getting lots of dreams.

jaybird8
Posts: 13
Joined: Tue Jun 30, 2015 10:04 pm

Re: Dopamine agonist withdrawal

Postby jaybird8 » Tue Aug 18, 2015 1:46 pm

It has been a while since I have posted. I started the Mirapex withdrawal process on July 4th. I was on 0.75mg at the time. I had been on Mirapex for 7 years and was mentally dependent on it. I followed Dr. Early's protocol for stepping down and am now off of Mirapex. It was not easy but it can be done. By the time I got down to 0.125mg I was only getting 1 1/2 to 2 1/2 hours of sleep and not able to get to sleep until 5 or 6am. By day 4 or 5 of being Mirapex free I was starting to get 3 to 4 hours. Sometime only 1 hour at a time, but I was getting something.

I was prepared though thanks to Dr Early's advice and the feedback of those who went before me and shared on this discussion board. I was fortunate to work for someone who cared and I was given much latitude regarding my arrival time, departure time, working from home, or just taking whatever time off I needed. This alone relieved significant pressure. Knowing that I did not need to be "on" for work allowed me to approach each night with the mentality that I will get whatever sleep I can and not worry about the next day. I ended up taking about a week straight off of work to get through the worst phase. I lined up a lot of videos to watch online. I also bought a used recumbent bike that I rode many nights while watching TV at 3am. This helped a lot.

By the time I completed his protocol, my symptoms were back to my baseline of 7 years ago. The severity of my RLS was much better. Dr. Early then prescribed Gabapentin if I wanted or needed it. Though I did not want to get back on another medication he ensured me my symptoms would not augment on Gabapentin. I have been using it and it has helped so far. My biggest issue post Mirapex has been getting to sleep at a reasonable hour. My sleep rhythm seems to be way off. The good news is once I am asleep I am getting quality sleep.

I am experiencing significant depression "hangover" though. Not sure if this is common after withdrawing or not. Another challenge to overcome but I am confident I will. Though still trying to figure things out, I am very glad to be off of Mirapex.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest