Augmentation & DAWS

[Nieceali]

Hi
I’m not sure where to start. I’m very grateful for this resource though.

Since 2020 I’ve had RLS since an emergency hysterectomy after post op cervical procedure that caused arterial hemorrhage in late 2019. I wonder about nerve damage after reading some of the discussions. I have numbness/weakness in hands during night & now much pain in arms.

In 2022 I asked for an MRI to rule out Parkinson’s or MS and instead found a brain tumor on brain stem-neurosurgeon said RLS not related & finding was incidental. I had a craniotomy a little over a year ago & tumor was benign thankfully. RLS continued to get worse and roprinole was increased.

At the end of last September I was up to 6.5 mg roprinole and ended up in a psychiatric facility.
I was put on klonopin to treat augmentation & currently down to 2.75 roprinole. I’ve slept better for months, but recent symptoms have returned & now having to increase klonopin or start earlier in day. DAWS has been an issue & scary. My mood disorder has been the worst it’s ever been.
I’ve tried gabapentin w/ bad side effects, & won’t do any of those other class of drugs due to mood disorder.

Iron levels seem fine. The roprinole taper is down to .25 mg every 2 wks to avoid DAWS. Am I on the right track?
Life has been hell w/ daily panic attacks, exhaustion, anger outbursts & my current tapering schedule will take another 6 months. Is this what people have to go through during augmentation?
Any suggestions/feedback would be much appreciated.

Gratefully,
Ali

[ViewsAskew]

Hi Ali - What a difficult journey you've had - great that the tumor was benign. Welcome to the board and I hope you find the help you need here.

As I understand it, most WED/RLS experts recommend decreasing ropinerole .5 mg every 3-7 days to prevent DAWS. Even if you wanted to be very careful, you could try .25 every 5 days and see how it goes.

I've not ever heard of using clonazepam (brand name in the US is Klonopin), however, to deal with augmentation. Most doctors either have you tough it out or use an opioid instead. Clonazepam can be habit forming and brings its own set of issues.

Augmentation is truly horrible. I wasn't on a high dose and I had symptoms 24/7 in my arms and legs and got between 20 minutes and 2 hours of sleep per night - for many months. When I found a doc to help me, he used methadone and within a couple weeks, I had reduced pramiexpole to zero. My biggest issue, then, was stopping clonazepam. It rarely really helps WED/RLS, but rather can help us stay asleep through the symptoms. I only took it a few months, but became physically dependent on it. When I tried to stop it, I became very ill. It took me at least 7 or 8 months of teensy-weensy reductions weekly to stop it without becoming physically ill. Good news is that only about 50% of people become physically dependent - hopefully you will not be one of them.

[Rustsmith]

Klonopin (clonazepam) is a benzodiazapine, which is the classification for the old sleeping pills. It can be extremely difficult to get off of and as Ann said, it is habit forming. Recent research has also hinted that it may result in a hastening of the onset of dementia in those who are prone to that condition. Although doctors are very hesitant to prescribe opioids, in my mind Klonopin is worse. And I will add that I take Klonopin to treat another condition and have accepted that I will never be able to get off of it and that it will hasten the progression of my dementia.

[Nieceali]

Wow, thank you so much for this info, very scary about klonopin -I’ve already had to up my dose. I will get in w/ my dr asap. My symptoms have come back more intense, recently w/ klonopin.
Could klonopin being causing worsening symptoms w/ my mental health-panic attacks, etc?? Dementia runs in my family.

[Rustsmith]

Klonopin probably isn't worsening your panic attacks. In fact, it is often used to treat panic disorder.

Your best bet is to try to convince your doctor to prescribe an opioid for the treatment of your augmentation. Here is a publication that was written by the leading RLS experts to educate doctors that opioids are the proper way to go with treating patients like you. We usually suggest that you read through it, highlight a few relevant paragraphs and as your doctor for his/her opinion on how this relates to your situation.

https://www.mayoclinicproceedings.org/a ... X/fulltext

FYI, refractory RLS is RLS that is either in augmentation or post-augmentation.

The other document to read, highlight and share with your doctor is the one that the link in my signature points to.

[Nieceali]

Thank you so much! This info is what I was going to ask for next &,what I need to show my dr to get him to taper me off klonopin asap. I’m hopeful he’ll agree to it.

[Rustsmith]

I hope that all goes well when you see your doctor. Please keep us updated.

[Nieceali]

Thx, Another question:
Almost every morning I experience high irritability, over-stimulation, panic, anger, rageful outbursts (that I hide from my family outside hitting things), crying, depression, hopelessness. I feel like I’m coming out of my skin, losing control over myself. These behaviors are so unlike me & scare me.
I cannot figure out what is causing these episodes & in order to get through the day functioning w/ my family I have to take another benzo (lorazepam) Or I first try hydroxyzine ( non-benzo).
Most nights I’m taking only 0.5 mg klonopin & sleep through night. I’m currently on 2.75 mg roprinirole & have been past week & a half. My dr recommends .25 mg taper every 2 wks to avoid DA w/drawal.
I’ll be tapering down to 2.5 mg tonight. I am sleeping which is a blessing but my mood has been an agonizing trade off. Could it be a paradoxical reaction to klonopin? I’ve been on it since end of September.
Any ideas of what could be causing these episodes & next steps to get relief?
Thanks.

[Rustsmith]

It is very hard to say other than to old comment that we are all an experiment of one. Tapering off of a dopamine agonist without the aid of an opioid (even while still at a higher dose), is ALWAYS difficult and only gets harder as you approach and then hit zero. Being augmented is something that only those of us that have been there can appreciate. It does different things to each of us other than being a very, very difficult time in our lives. I started having panic attacks as I augmented, something that had never, ever happened to me before. It was a terrifying experience. Congratulations for being able to hide it from your family, but now is the time to tell those that can understand that you are going through a very difficult period and that any outbursts are your problem and not their fault, sort of an apology in advance for what you know is ultimately going to happen.

[Polar Bear]

I was augmented on 5mg of ropinerole and tapered off very slowly over 10 months. I did not have panic attacks just very severe RLS. It was my choice to do it this slowly because I had previously failed. But... I had the support of cocodamol high dose and also pregabalin. The pregabalin was actually prescribed for neuropathy but had the benefit of helping with RLS symptoms.
I did not have any of the difficulties that usually come with weaning off ropinerole. Several times I paused longer at a particular level and even went back up slightly while things settled. The pregabalin was increased as I got lower in the ropinerole dosage. Eventually I got there and continue to manage my symptoms with max daily dose of cocodamol and pregabalin. It's not perfect but is manageable
I am now starting prescribed antidepressant Sertraline and am aware that this may have a negative effect on my symptoms and will watch closely.
I agree with Steve's comments to tell those that can understand so that you do not feel so alone.

[Nieceali]

Thank you both, your feedback is invaluable to me.
I want to clarify that my withdrawal symptoms may be less being on an opioid rather than klonopin coming off roprinirole, is that correct?
I know it’s all speculation & experimentation but wanted to present that to my dr in an effort to move to an opioid treatment.
Thx again.

[Rustsmith]

That is correct. Opioids are the only meds that are strong enough to cover the withdrawal symptoms that you are experiencing coming of of ropinerole. Klonopin is a strong medication, but it isn't strong enough to cover dopamine agonist withdrawal. The opioids are stronger and have the added benefit of also interacting slightly with the dopamine receptors in the brain and spine to help ease (or completely cover) the symptoms of withdrawal.

The other question for your doctor is how (s)he intends to treat your RLS once you are off of ropinerole. The use of klonopin was discontinued around 1990. Some doctors wish to try gabapentin or Lyrica before finally taking the step to the opioids. When I was making the transition, I was already on gabapentin for another condition and knew that it was not enough, so I asked my doctor to prescribe an opioid (methadone) for both the withdrawal and for afterwards as the treatment for my RLS. I have been on methadone now for seven years.

[Nieceali]

Wow, this is all great to know & am so hopeful he’ll prescribe opioids for the withdrawal alone, not sure what plan is after roprinol cause I’ve tried gabapentin & side effects were too much on my mental health, etc-those class of drugs are not good for me.
I sent my dr articles you sent. I haven’t went through them yet but is there somewhere in there indicating that opiates are better suited for DA withdrawal symptoms & that klonopin was discontinued in the 90’s?
My dr is just going to prescribe psychiatric meds for my symptoms & I don’t want to add more meds to the mix.
Thx again.

[ViewsAskew]

Wow, this is all great to know & am so hopeful he’ll prescribe opioids for the withdrawal alone, not sure what plan is after roprinol cause I’ve tried gabapentin & side effects were too much on my mental health, etc-those class of drugs are not good for me.
I sent my dr articles you sent. I haven’t went through them yet but is there somewhere in there indicating that opiates are better suited for DA withdrawal symptoms & that klonopin was discontinued in the 90’s?
My dr is just going to prescribe psychiatric meds for my symptoms & I don’t want to add more meds to the mix.
Thx again.

If you join the Foundation, they have content you can take to your doctor that do explain what treatment options are best. I think that the link in Rustsmith's signature may take you there.

[Rustsmith]

Yes, the link in my signature will take you to a paper written by a number of RLS experts with the intent of educating doctors on the various options for treating RLS ranging from oral iron supplements to the latest opioids. And you do not need to be a Foundation member to have access to the paper. The Foundation paid the fee that Mayo Clinic charges so that it is free to everyone.