I've been taking Neupro 1mg patches daily for about 2.5 years for RLS. It managed my RSL symptoms effectively.
Three months ago I had some issues getting a refill from my neurologist and very regretfully I went 5 days without the medicine. I suffered major withdrawal symptoms including anxiety, depression and suicidal ideation. It was horrible.
I went back on the medicine on day 6 but continue to struggle with anxiety and depression. I have a mood disorder and generalized anxiety disorder, and I believe my anxiety and depression is partly from life circumstances, but I wonder if the 5 days of missed medication could have led to prolonged withdrawal symptoms? I have a call with my neurologist Monday but am curious what people here think. I'm really concerned.
I also wonder if I should try tapering off Neupro and get on something else? But I think the withdrawal will be too intense judging by what's happened.
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Discopage
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Withdrawal from any DA is SEVERE. Most will suffer severe symptoms and suicidal ideation even if they have never had anxiety or depression. Just look up Augmentation and withdrawal from dopamine agonists.Make sure you never run out of your meds again. Most people need opioids to help them get off DAs.
Should the withdrawal symptoms go away if I'm back on the patch? It was 5 days off the med and three months later I'm very anxious. This is truly horrible. I don't know what to do.
That sounds unusual but, I suffered anxiety for months after getting off Ropinirole. As I never went back on it I cannot honestly say I know why you are still having anxiety/panic attacks. It is absolutely horrible and I sympathise. Maybe you could ask for diazepam to deal with the anxiety asit also helps RLS. Definitely bring it up with your doctors.
My psychiatrist prescribed gabapentin which helps for mild anxiety. Right now I'm dealing with very high levels of anxiety though and gabapentin isn't cutting it. I'm trying not to ad more and more drugs. It's endless.
There's not a lot of info online about Neupro withdrawal beyond the symptoms. Unclear if the symptoms should go away when you're back on the drug. I certainly hope so but judging by how I feel, I'm still experiencing withdrawal. This is awful.
Have a look at this and show to your doctor. I definitely had DAWS but never had any impulse control problems when on Ropinirole. Dopamine agonist withdrawal syndrome can last months. We all have very different reactions to drugs but I'll bet your experience isn't rare and it will be under reported. File a report via the Yellow Card Scheme in the UK and the FDA side effects section. The more people that report, the better the info for doctors and other patients.sciencedirect.com/science/a...
I agree with Manerva. The gabapentin might be making the anxiety worse. I have just been through it again as I developed panic attacks on kratom. I was only using 1 teaspoon at night for 6 weeks and it was miraculous. Stopped all my RLS and I slept for 7/8 hours without any RLS waking me. However the all day anxiety/feeling of dread was just horrible so I stopped kratom and the withdrawals took a week. I used diazepam which really helped so follow Manerva's advice and ask for that. 1mg should be enough to sort the anxiety until you're off gabapentin.
In the short term I've been prescribed a small amount of Clonazapem for sleep though I'm aiming to wean off it within the next two weeks. In general try to avoid long term use of benzos. I'll ask my doctor about diazepam. I rarely take gabapentin and it's just been prescribed over the last month. I'll work with my doctor to drop it.
One thing I'm really gutted about is how DAWS is so severe for my mental health yet my neurologist was so nonchalant about my refill. Unreal.
I am stunned that it can't be widely accessed. I found it very easily from the UK and do not need to pay to see it. As you are in S. Africa, it must be something to do with that. I don't think it's worth paying to view as it is one of many scientific articles on DAWS. It would only be worth paying for if you are suffering DAWS and your doctors are not familiar with RLS and don't understand what you're going through.
I was interested because it was of recent date. But a quick search showed that most work is closely based on Nirenberg's work in 2010. She seems to be the foundation, and she first described it.
I hoped that someone may have come up with something new and positive, but it seems not.The paywalls are common here. There is often a way around it, and a title may lead one back to PubMed, but I did not find this one.
I suspect the rates of DAWS have gone through the roof but as doctors have no idea about RLS or the side effects of DAs they won't record it on side effects reporting sites and the poor patients will probably be unaware as well. That's exactly why I've been pushing for more education.
I had the exact thing happen to me only a doctor suggested that I go cold turkey off the neupro. I was on 3mg a day. I had the suicidal ideations and the hopelessness. I feared the night time but then the day became just as bad. I would fall asleep on my feet because I couldn’t sit or lay down because my restless legs were in deep fast overdrive. I started falling. Finally I went back to it after 4 days. The feelings went away, but I’m scared as hell to ever go off these patches even under a doctors care. I’ve heard of DAWS and know it is something that a great many of us have experienced. I was one of the lucky ones. Mine went away as soon as I went back to the patch.
I am so sorry to hear of this. I'm afraid that it does sound as if you are suffering from DAWS due to the sudden cessation of the neupro. The link Jools gives should give a good insight to this.
I'll check, but I do recall reading that even going back on the drug, doesn't necessarily mean immediate recovery.
For you, if you want to wean off neupro, it will take some planning. To reiterate Jools, make sure you never run out again.
I'm wondering what the worst part of it is for you? That is, is it either the RLS symptoms or the anxiety/depression/suicidal ideas.
I suspect the latter.
I apologise for questionning your psychiatrists judgement, gabapentin is used as a treatment for RLS and it can also ease anxiety and promote sleep.
However, it can cause depression and suicidal ideas. In which case it might be adding to your problems, not helping them!
It's usual to warn people with RLS not to take SSRI antidepressants as they can make RLS symptoms worse. However, if anxiety/depression are severe, especially suicidal ideas then I believe the RLS Foundation recommend taking Sertraline or Citalopram.
Benzodiazepines, such as diazepam, may be "safer" if you have RLS, but they're not antidepressants and are no longer used for anxiety normally. They're not that effective. SSRIs are the usual treatment.
Some people may suggest trazadone or nefazadone, as these are considered "safe" for RLS, but again they're best known for their sedative rather than anxiolytic/antidepressant qualities. Another that may be suggested is buproprion, available as wellbutrin in the US. This is actually good for RLS.
Since you say you suffer anxiety/depression, mood disorder, I wonder what your usual strategies for dealing with this are and if they are failing you at the moment. I appreciate that your current situation has been partly triggered by the DAWS and/or gabapentin, but seeking psychological help might benefit you generally when you get through this. CBT and more recently Mindfulness CBT are recommended.
My first suggestion is, whatever else you do, wean off the gabapentin!
My anxiety and depression is by far the bigger source of suffering. I'm appalled my doctor delayed in getting me a script, and then I had challenges getting a new coupon.
Good point about gabepentin.
I take lexapro currently though it's no match for the depression I'm experiencing from DAWS. I also take trazadone for sleep.
I start a new therapy program early next week and hope it helps with coping skills.
If you come upon any info regarding getting back on Neupro and reducing DAWS symptoms, let me know. I don't know much about dopamine but I thought by taking the med again, it would eventually alleviate symptoms.
I'm pretty paralyzed by this. Lots of crying. Will speak to my neuro on Monday.
This suggests that unfortunately that DAWS isn't treatable by levodopa or a dopamine agonist. Hence starting the neupro again may not have helped.
I'm sorry this isn't encouraging.
It may be that since the neupro is of little help, you could discuss tapering it off anyway with your neuro. This would prevent you ever having to experience this again.
If your neuro is willing a low dose of a potent opioid may be of some help with RLS symptoms, though not necessarily the DAWS.
In addition, as in all cases involving RLS, if not already done, have a blood iron panel done, i.e. serum iron, transferrin and ferritin.
Even in the absence of iron deficiency anaemia, Brain Iron Deficiency is a causative factor in RLS. Iron therapy is a treatment.
Thanks. If going back on a DA has no impact on DAWS, then that's one more reason doctors should be crystal clear about the risks before prescribing these drugs. I can't believe this.
Yes it's very difficult to understand why doctors should so readily prescribe drugs that are so potentially harmful.
It's also hard to accept that they prescribe them without any warning, or giving people a choice. This is actually both illegal and unethical in the UK. I believe it's also illegal in the US.
What it mainly comes down to is doctors lack of knowledge and lack of training about RLS.
That does it make it more understandable, but not acceptable.
"The symptoms did not improve with levodopa, even in the ‘on’ state, but did improve with DA repletion. Finally, the symptoms could not be explained by other clinical factors."
As the BMJ article states DAWS certainly does not respond to levodopa. Other sources generalise this to any dopaminergic agent.
You may have had "normal" withdrawal effects during the six days you had no neupro. These are usually just a worsening of RLS symptoms and sleeplessness.
Withdrawal effects can occur within 24 to 48 hours and if the withdrawal is total, i.e. you had no patches, then these withdrawals can be very severe. I know from experience.
These "normal" withdrawals will respond to starting the DA again.
Please take into account that I'm not qualified to diagnose your current situation. It merely "sounds" as if you have DAWS,
My situation is complex since I have bipolar. My psychiatrist classified what I’m experiencing as bipolar depression. I think it’s fair to say missing Neupro is what spurred my crash. Whether I’m experiencing DAWS still or not, I’m not sure. I’m severely depressed again today and am weeping. It is very difficult to cope with this.
Yeah I participate in one. And the outpatient program I'm starting Monday has a lot of group therapy. It's all virtual but it should be helpful. I also contacted a second neurologist, who I'd seen last year. I'm going to get him to evaluate me, in addition to my RLS doctor.
Feeling a lot of muscle tension from the anxiety. Deep breathing helps a bit. I had aspirations to start applying to jobs within a couple months. I've been on disability. I still hope for imminent recovery but it seems things are getting harder before they're getting easier.
I'd say my main symptom these days is anxiety. I'm not sure if what I'm experiencing could also be classified as panic attacks, maybe. There's some depression mixed in there but anxiety is the primary symptom, and the depression is more mild. I can go out to eat and enjoy it, or watch a comedy and enjoy it, for example.
I've had generalized anxiety disorder for many years so I'm used to being anxious but the frequency and intensity of my anxiety nowadays is much more extreme. In the past I didn't weep from anxiety. Now I'm pretty much brought to my knees. I sure hope one of these doctors has valuable input for me.
The paper cited below by Manerva is by Melissa Nirenberg, who first reported this a decade ago, and upon which all other work is based. There seems to be no further clinical solution other than a return to the dopamine agonist, hopefully in a lower dose.
I’ve been back on 1mg Neupro since March and I’m still experiencing all these brutal symptoms. I don’t know if this means I need to increase my dosage but honestly I’d do just about anything to get relief. I couldn’t sleep again very much last night, not from restlessness but from anxiety. If I can’t get help I’ll probably need to return to the hospital, but all the treatment I got last month didn’t seem to help.
Do you think this 14-month period also pertains to healing from DAWS? Is what's happening with DAWS a low dopamine level?
Agonists and antagonists can help in the treatment of addiction to drugs and alcohol. Research has found that it is not easy to adjust dopamine levels after extensive use of dopamine-heavy drugs. So how long for dopamine receptors to heal? On average, it may take approximately 14-months to achieve normal levels in the brain with proper treatment and rehabilitation.
My first but is a personal preference. I prefer to read what's reported in scientific journals or articles that REFER to research studies. Again, just my opinion I especially don 't trust articles that say "research shows" or the like but don't actually give a reference, so you can't check its veracity for yourself.
Everything I've written below is based on what I've read. Apologies for not giving any links or references. I don't always keep a record. I may have inadvertently included some minor errors.
Second but. The areas of the brain involved in addiction, ADHD, schizophrenia etc are not the same areas of the brain involved in RLS.
Third but. RLS is associated with a lack of D2 dopamine post synaptic receptor sites. It's not due to a lack of or too much dopamine. Dopamine levels, in the affected areas of the brain, of somebody with RLS are either normal or raised. In addition when RLS is treated with a dopamine agonist (DA) such as rotigotine (neupro), then the drug stimulates the receptor sites. However in the long term the use of DAs "downregulates" the D2 sites, so there's even less. This is a possible cause of augmentation.
Withdrawal of the DA can allow the number of sites to recover, but with RLS even with recovery, there's still a lack.
There is a possibility that augmentation, or even long term use of DAs can cause permanent damage to receptor sites.
Giving a dopamine antagonist, which "blocks" receptor sites to somebody with RLS would be a total disaster!
Just to complicate the whole thing, when a DA or dopamine is given to somebody with RLS, it doesn't just go the areas of the brain affecting RLS, it goes all over. Hence it can cause addictive type behaviour (known as an Impulse Control Disorder - ICD) and even symptoms of psychosis.
Thus, for some people withdrawal from a DA can have features of opiate withdrawal.
Addictive drugs like opiates or cocaine do affect dopamine levels, as the article says and this is the mechanism of addiction. After withdrawal things might recover in other areas, but as above, not in the areas affecting RLS. Similarly withdrawing a DA may affect other areas.
This is possibly, (my opinion) why most people who suffer DAWS, have previously developed an ICD from taking a DA.
Simply put, I've never heard of the 14 month period before. I recall that opiates can cause some permanent damage too. People may suffer "cravings" for years.
The literature on DAWS simply says it can last months or years.
I guess though that the article doesn't really apply to RLS entirely.
Here IS an article some of which you may find informative.
Hi Discopage I to have been on Neupro patches for many many years and find they are “usually” a godsend for my RLS symptoms which at times have kept me awake for up to 3 days at a time. My consultant from the sleep clinic has recently suggested that I change to a controlled drug, Targinact starting on a low dose and increasing to quite a considerable dose. I have discussed this with my GP and have decided not to change. I am prescribed the patches and as a back up I have Oramorph 10mg/5ml which I can take if required. I only use this for extreme pain and on occasions when I have not slept for days on end. I have been in the situation you have unable to get my patches but I have stressed the importance and insisted I need them I have never left it till the day before I run out and on occasion I have temporarily had to wear two patches until the correct does patch comes in.
I understand. I’ll talk to my neurologist about it. My biggest concern right now is managing anxiety symptoms. Does anyone have any suggestions as far as deep breathing or meditation exercises that helped you with DAWS?
I think I’ve become more anxious since I realized my symptoms might be DAWS. I might be better off trying to convince myself my anxiety and depression are simply tied to my bipolar and generalized anxiety disorder. Psychologically this would seem less daunting to me.
I do use mindfulness techniques a lot to calm my breathing and also my anxiety. I am also on medication for anxiety but when I am at my worst which has happened a few times through the last 2/3 years it has definitely helped, I am not one of these people who can take myself off to a happy place or anything like that but I can slow my breathing down by counting my breath’s 1 - 10 then start again etc . If your mind wanders you start again from 1 and so on. It sounds daft but for me the concentration of the slow breath in then out plus the count, one in- two out and so on, then remembering at 10 to start again at 1 takes my mind from the anxiety and causes me to concentrate it elsewhere.Try it and let me know how you get on
It's helping a little. I'm in a very anxious mode since yesterday and if I'm not deep breathing, I'm basically having an anxiety attack. It's brutal. What medication do you take? I take lexapro which is supposed to help with anxiety and depression but it doesn't seem to be helping at all. Meeting with the psychiatrist on Wed.
I take Citalopram also called Celexa and yours is also called Escitalopram which is almost the same thing. Yours is approved for Generalised Anxiety where as mine is used “ off label”.
I have been taking Citalopram for depression since I was in my early 20’s and I’m now in my early 50’s. They have tried me on many different anti depressants but nothing works for my mood other than Citalopram so I do dip in and out of very bad Anxiety States and have intense counselling I’m very lucky that I have very good support from my GP Surgery and local Well-being services without them I would probably not have made it this far.
I’m so sorry for your suffering. Unfortunately, I have been struggling with withdrawal for over a year now. I was on 9 mg of Nuepro. I have been Completely without it for about a month. I had to increase and decrease numerous times because the depression and anxiety were so strong. I have kept a log and as I look back on the entries, I can see that I have made progress in 5he mental health department. This has been helpful for me. I still feel hopeless and cry indiscriminately almost daily but the severity has diminished. I started taking Wellbutrin about a year ago which possibly has helped, hard to say. I tried CBT with no improvement whatsoever. At one point I thought that I would never get better. Today my outlook has improved. So all that I can say is it may take awhile. It’s hard to guess how long that may take because everyone is different. I know that seems cruel to say when you are in the throws of DAWS because you are so desperate to feel better, to feel “normal” again. I do want to add that you must cut the patches in the smallest possible dose. Reduce very slowly! Don’t give up hope. It will get better.
I was doing fine earlier this week and then the anxiety and crying hit me yesterday and today. Do the symptoms ever come and go for you? I honestly think I'm crying and anxious now because I'm freaked out that I have DAWS and earlier this week I wasn't very anxious and wasn't crying cause the thought wasn't in my head.
Oh yes, the symptoms constantly come and go for me. Literally from one minute to the next. I have found that keeping busy helps. Then again, along with the depression comes the lack of motivation. So it is a struggle. I think that it is best NoT to think about DAWS because it could very well keep you in a downward spiral and thinking that your dopamine receptors will never heal. It will get better. I didn’t feel this way 3 months ago.
Hidden Joolsg My neurologist wrote me today in advance of my 4:30 appointment. He adamantly denies I have DAWS. This is what he said. Any thoughts? He once again said Neupro patches can't be cut. In his mind if you are on 1mg and you're going to drop the med, you'd just stop taking it. His input is contrary to what's been shared here.
"I am also sorry to hear you were hospitalized. I am well aware of Dopamine agonist withdrawal syndrome. It occurs when one stops abruptly a HIGH dose of a dopamine agonist such as Neupro or Requip. However, the dose you were taking (Neupro 1mg) is the smallest dose possible and can be safely stopped according to the drug label. In fact, there is not even a way to take smaller then 1mg as we are not allowed to cut the patches. Moreover, once the medication is restarted, all the symptoms of the "withdrawal" should resolve in a week or so. So, if you are saying your depression did not get better after you restarted the medication and you missed 5-6 doses, then you did not have DAWS. However, I always warn patients that this medication cannot be stopped cold turkey if one takes more than 2mg per day."
I spoke with my neurologist and he echoed the above on the call. Said he’s colleagues with Nirinberg and is very familiar with her research. He said DAWS is almost exclusively something that happens with Parkinson’s patients on high dosages of DA. He also said that withdrawal symptoms go away when the patient starts taking the DA again.
He thinks because my symptoms didn’t go away, that they weren’t from withdrawal. He thinks the depression, anxiety and suicidality I experienced are likely part of my bipolar depression. I was manic before I crashed in March. The crash was catalyzed by missing the Neupro dosages.
Any thoughts on all this? I want to believe that I’m not dealing with dreaded DAWS.
My doctor didn’t have any other recommendations as far as changes that could help my psychiatric symptoms. He recommended sticking with Neupro 1mg since I haven’t had any augmentation.
Are there any videos out there of people suffering from DAWS?
I’m so sorry you’re going through this. My experience began with Requip. I was up to 12 mg and reduced the dose to 4mg in 6 weeks. This was in the fall of 2015. Within two days I suffered an anxiety attack of epic proportion and continued to do so almost daily for 4-5 years. Also my mother died about the same time so that probably added to my depression. I know that is discouraging, but I was on it longer and took more than you are taking I am sure I had DAWS, but my doctor was less than sympathetic A new Dr. switched me to Neupro 2018. The depression and anxiety attacks continued until recently I noticed that I don’t get as sad and anxiety attacks are much less frequent. Perhaps time helped, but I am Participating in a study which Tests The effectiveness of having a continuous supply of dopamine through the use of an infusion procedure. I noticed before I started to study that I was much more susceptible to anxiety and depression during off periods Between my doses of medication. In addition to the Neupro patch I was taking an oral medication called Stalevo. a few months ago I noticed that The mood symptoms of my Parkinson’s have improved considerably.
Other factors of my improved condition include faithful friends Who prayed for me and visited me often. The Lord has blessed me greatly despite and through the anxiety and depression and I believe has had mercy on me and diminished the symptoms. I now take Welbutrin 100 once daily and I am eating gluten free. There are several books about diet and how it affects our emotions you may find that restricting your green intake or dairy helps also
So I recommend these things. Read Romans 5, , James and Ps 22and 33and86 and sing “Great Is Thy Faithfulness. The name of the study isBoundless. Ask your doctor to check it out for you. Also check out the procedure called DUOPA. Make some dietary Changes and one other thing: I finally just gave into the anxiety and depression and cried A Lot. I think I may have cried enough to wash it away.
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