On what would have been Robin Williams' 72nd birthday, a reminder of how dangerous dopamine agonists can be. If you mention DAWS to a UK doctor, they have no idea what we are talking about. They mistakenly say it only happens if the patient had Impulse Control Disorder. It can affect anyone taking these drugs.
Withdrawal from Ropinirole, Pramipexole and the Rotigitone patch can cause anxiety, depression and suicidal ideation. Those of us who have been through it know how awful it can be.
This is very interesting Joolsg. Thank you
I’ve said it before. No one told me not to stop cold turkey. I remember one day I said I am done with these damn pills, told my wife and she agreed. It was all downhill from there. It was the darkest time of my life. I had thoughts that I knew were wrong and couldn’t stop them. I’m lucky to be alive.
It took YEARS to recover!
I can’t believe the citizens in the USA had to sue the FDA to put warning labels on DA drugs.
citizen.org/news/fda-must-a...
You have my support Joolsg
Absolutely Joolsg, you speak to the medical professionals about Augmentation and you receive a blank look. All of us either going through this or having successfully come out the other side of Dopamine Augmentation know the trauma of it. When will the medical professionals take notice of their patients and learn from those who actually know.
Horrible, thank you for reminding the forum.
WE BENEFIT FROM YOUR DEDICATION FOR KEEPING US INFORMED, HOW WONDERFUL IT WOULD BE IF YOU RAN PROGRAMMES FOR THE MEDICAL PROFESSION
Amazing and senseless! Thanks to this forum, I never wend down the DA road!
Hi Joolsg. I have had DAWS for 2 years now. It’s unrelenting. I have a history of recurrent depression, but this is different, historically I will get sever depression, it’s treated , then I get better, but this is like a permanent complete disinterest in everything. My drive to do ANYTHING has just gone, I work part time, mornings only, then I come home and just go to bed, I also spend the entire weekend in bed. I’ve been to see psychiatrist, had my antidepressant changed 4 times in 2 years but nothing is working .
You have had DAWS for 2 years? Any advice you can give me as I am starting to think I too will suffer with this for a very long time! I can empathize with you and my heart goes out to you! When I went to Mayo Ckinic thry only suggested I go back on DAs and slowly wean off again. But also said based on the amount of DA I took (3mg for 8 years) that is I went back on them it is unlikely I would ever come off. After what I went through I am not in agreement with that but don't know what else to do! And don't understand going back on them when I already experienced augmentation. Just feeling like there is nothing I can do!
It's a horrible dilemma and adds evidence to why these drugs should NOT be prescribed. Anything that affects the pleasure hormone, dopamine, is bound to cause issues when people stop taking them.The depression/anxiety can get better.
I had PTSD for at least a year after stopping Ropinirole. I was on 4mg for over 10 years.
Now my RLS is totally controlled and I'm sleeping, I feel my PTSD has gone.
I'm so sorry to hear this. Dr Berkowski talks about it in one of his webcasts.These drugs can cause permanent damage to dopamine receptors.
Some experts say often the only solution is to restart a low dose of DA. I would be so reluctant to do that, knowing the torment of augmentation.
Have you heard of David Nutt,a professor at Imperial College in London? He did trials of psilocybin mushrooms on depression with amazing results. It might be worth trying to see him.
Hi Joolsg. I suffered awful depression after Ropinirole was out of my system. I believe my brain forgot how to create dopamine on it's own. I was begging my loved ones to give me permission for me to end my life. I was constantly sobbing and making limenting guttural noises. I tried rTMS, no improvement. My GP felt powerless because I couldn't take an SSRI. He prescribed Wellbutrin. I couldn't tolerate it because of the major anxiety and insomnia it produced. I tried taking it for a year in hopes that these side effects would subside. They did not. Trazodone did nothing for me except make my RLS worse. So my GP suggested I try Ketamine. I went for a consultation with administering doctor. Besides being extremely expensive, his description of the process was very daunting. He mentioned to that he was doing a psilocybin trial. I asked him which he would recommend for me. He said, hands down, psilocybin. He also said he could not prescribe it because it was illegal unless you are in the trial. Because I would have to take a specific amount and am very sensitive to drugs, he felt the dose would be too much for me so the trial would not be right for me. Well, I knew I could get some of these mushrooms through a friend, I did so. My GP was happy to hear I was doing this and gave me his blessing. I'm talking about microdosing. A "tripping" dose is about 3.5 grams. I started taking 1/10 of a gram twice a week. (No mind altering feeling at all!) I felt a difference within that first week. This was June 2002. I've been taking it ever since. I got to the point where I was feeling very good, even finding myself humming. Which was a big deal after all those months of those limenting guttural noises. I was feeling GREAT! I hit a snag a couple months ago. I had been playing around with doses. The highest was 3/10 of a gram 2 or 3 times a week. But Usually 2/10 of a gram. All of a sudden I experienced elevated anxiety and insomnia with increased RLS. Since it is a stimulant I thought maybe I should cut back to 1/10 gram every 10 days. My anxiety improved but depression started coming back but not nearly as bad as before. They say it rewires the brain which I thought was just what I needed after DA hell. Maybe my brain got rewired enough and I just have to be happy with feeling better but not great. At this point I'm trying to figure it all out. There is no play book to reference. Just trial and error.
That is absolutely fascinating. Thanks so much for sharing that info.
I really hope that the lower dose helps and that the rewiring caused by psylocybin starts to make you happy again. What a great GP you have too.
Let's hope more GPs become aware of how dangerous dopamine agonists are and stop prescribing them.
You are saying you have been off pramipexole for 2 years and are still suffering? I see you mention gabapentin in your profile. Are you taking it? If so how much and when and if not why did you stop it?
Yes I’m on gabapentin now, that was introduced as the pramipexole was reduced. I’m on 75mg x3 times a day gabapentin .
I'm confused because gabapentin doesn't come in a 75 mg dose. Do you have symptoms during the day? If not just take it all at night. Many doctors prescribe it 3X a day because that is the advice for pain. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin." and that is at night. I would ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, take it at least 3 hours before or after gabapentin as it interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . If you need it during the day and the 75 mg is not controlling it during the day you can increase it then, but not nearly as much.
If this doesn't work then your dopamine receptors have been damaged and you need to come off gabapentin. Reduce by 100 to 200 mg every 2 weeks and you will have no withdrawal symptoms. If gabapentin doesn't work then you will need an opioid to control your symptoms. I would suggest buprenorphine.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. It also helps with DAWS. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Which antidepressant are you on? Many can cause RLS to be worse.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
I agree Joolsg. I have been suffering now for 3 months since discontinuance of dopamine agonists. I just don't feel myself, leg weakness, cold intolerance and lack of motivation as well as depression. I am assisted by gummies to help with sleep but most of my days are spent just trying to make it through the day. Lack of motivation all around. I am taking B vitamins, vitamin D, magnesium, Lyons mane, chromium. I go to exercise class several times a week, been trying to do all that things suggested for help including listening to music, cold hot showers. I am struggling to say the least. My doctor said let's hope it's months instead of years. When I read online it says that the only known cure for DAWS is to go back on them. I just don't understand all this. I don't intend to go back on them at all! I just wish there were more doctors knowledgeable to give me some guidance. I feel like I am severely failing and totally out of control of my life anymore.
Sorry also taking iron and had an iron infusion.
You probably know this but just in case - Take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Give it time. It took me at least a year to get over the PTSD and another 4 years to find a med that stopped the RLS.I no longer have that 'gloom'. Your brain was flooded with the 'feel good' chemical dopamine and then it was taken away.
Allow your brain to heal. Treat yourself to things that cause pleasure. The brain can find new pathways and start to hea.
Thank you for giving me some hope! I often find myself in tears which just was not the me in my past life! I try to do things that "used to give me great joy--making crafts and crocheting and now I just can't enjoy it. Believe me I've tried. I have numerous people that say they want the real me back and others that think I am faking for attention. Unfortunately that one is my sister that I live very close to. I know I've got to learn to not let this bother me but it does. I have a depression med that doesn't affect my RLS that seems to take the edge off. Maybe I need to up my dose. I don't know. I am trying everything I know how. A year seems like a very long time however I just read a post of someone that had DAWS for 4 years. So much of this is just hard to understand or anything that can be done about. I have got to say the Lyons Mane seems to be having a slight positive effect. I also read that Chromium can help so I'm giving it a try. Frankly it's hard for me just to put a smile on my face and my husband commented on how I have this new look(no smile) that is disturbing. Im sorry for feeling this way when I know others have it much worse. My main symptoms are weak thighs and severe cold intolerance. I've had my thyroid checked and it is normal. If anyone is reading this and has any thoughts on the cold I would appreciate it! I can't tolerate being cold(and it is hot and summer in the US) it even makes me sick inwardly if I get too chilled. My doctor just looks at me and acts unresponsive. Just want some answers if this is caused by DAWS!
some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Good luck! This is a tough problem to deal with as we're all so different to treat. Keep up your spirits, we're with you!
I just read that robin Williams had a 40% loss of dopamine neurons when they did an autopsy. He also had other problems. Sad!
That's scary. Very sad.
Could you share what med you found that works for you?
Of course. I take 0.4mg Buprenorphine. 0.2mg at 10pm, 0.2mg at midnight. Zero RLS since Day 1 taking it.I had severe nausea for 7 days and used my medical cannabis for a week. It completely stopped the nausea. After 5 weeks, I developed severe opioid panic attacks but 25mg pregabalin at night stopped it within 2 days.
I now take 0.4mg Buprenorphine and 25mg pregabalin every night, zero RLS and I sleep 8 hour's.
As Dr Buchfuhrer says, with the right treatment, and the right doctor, 97% can be RLS free.
I suffer anxiety and depression, how did you discover that the pregabelin helped. Would a low dose of Gabapentin do the same thing. I take Temgesic. Same dosage as you. I was previously on pramipexole. Up to 3 mg for 12 yrs . Went through all the DAWS dramas like so many others. Have not been mentally well for yrs now.
After withdrawal from Ropinirole, I had very low mood and PTSD for at least a year. It did settle and I became my normal self. I was fine until I started Buprenorphine. I developed panic attacks and severe anxiety 4 weeks after starting it. I recognised it straight away because the same panic attacks happened when I had started Oxycontin. Dr Buchfuhrer explained that opioids cause panic attacks and anxiety for some people and he advised adding pregabalin because it is sedating and counteracts the super alerting/anxiety caused by the opioids.
A small dose of pregabalin - 25mg worked straight away.
I've never had depression or anxiety before and realise it's the drugs causing the symptoms.
If you suffer low mood rather than panic attacks/anxiety, I don't know whether pregabalin or gabapentin would help. If you are suffering true DAWS, then trazodone or wellbutrin may be better options. They are sedating but also can help improve low mood. I hope you can find something to help.
Thanks so much for sharing your experience, sounds very similar to mine. Kindest regards Julie.
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