Has anyone recovered from DAWS? How long did it take?
Please be succinct, because I've become so stupid, I can barely comprehend anything more than a few sentences.
Please let me know if there is light at the end of this tunnel.
I took my final dose of ropinerole 6 weeks ago after tapering for 6 months.
Liz
Yes. It can take several months. You have been severely sleep deprived for months.
Finding the right doctor and the right treatment from now on can make all the difference.
Most of us have been through dopamine agonist withdrawal. The majority will recover.
What treatment are you now on? Have you raised your serum ferritin above 100ųg, preferably 200ųg/L?
Yes, Iron is high following 2 infusions. I'm on .5 mg suboxone for relief of RLS. It's the deep depression that I'm having trouble with. I also have flu like symptoms, nausea, fatigue and headache. And I feel anxious when I am away from home. I feel disconnected from life. I'm afraid my business is going to fail because I am no longer invested in it.
6 weeks is no time at all.Also, Buprenorphine can cause anxiety. I started it and it instantly stopped ALL my RLS, but 4 weeks later I developed opioid induced anxiety/panic.
I added a small dose of pregabalin, a sedating med, and it resolvd the anxiety.
So, allow yourself at least 4 to 5 months to recover from years on Ropinirole. Your brain has had years of dopamine, the pleasure chemical, and that's been suddenly stripped away.
Your brain needs time to adjust.
Try to accept it and allow your brain.and body to heal slowly.
The nausea is also common.on Buprenorphine. I took medical cannabis for 10 days and it totally resolved it.
If the depression doesn't lift by adding a small dose of pregabalin, discuss with your doctor and ask for trazodone. Many find it helps their mood and improves sleep.
Short answer: YES (not me, I never took DAs), plenty have, it takes time, you'll get there!
Welcome to the forum. You will find lots of help, support and understanding here.
Congratulations on getting off the ropinirole. I know it wasn't easy.
Since you are in the US you can also get Wellbutrin if needed for depression. It is the best one for depression although trazodone also helps anxiety.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Hi. I had DAWS when I stopped Pramipexole. It was bad - but it did end. It will not last - hang in there. It will take a few months. It will DEFINITELY end. Don't take your emotions seriously - remind yourself that this is DAWS, not you, and it will end.
Good luck to you Liz. DAWS was one of the worst experiences of my life. It took me a very long time to improve. I have never returned to my normal self but then again I was on an extremely high dose of a DA. Most people DO recover. Gary gave some good advice. Remind yourself that it is the DAWS and it will get better. Try to stay busy. Best wishes
my DAWS started slowly improving after two months (after 12 years on Pramipexole ). I tried one of the recommended antidepressants (trazadone or bupropion), but that worsened my RLS. But you might try one - my experience with the RLS symptoms is apparently unusual. In any event, you should start seeing some improvement any day now.
If the suboxone has your RLS symptoms under control, you might try reducing the dose slowly to see if that improves the nausea, etc. You can cut the suboxone strips or tablets if that is how you are taking it. Go slow and find the minimal dose that works for you.
hi there. Nothing new to add but basically to confirm all others have said.
DA withdrawal can take weeks/months. It can be hell. BUT ITS WORTH IT!
transitioning from your last DA to a suitable dose of an alternative can take weeks. It can be hell. BUT ITS WORTH IT!
Getting the effects of DAs from your system can take weeks. It’s frustrating. BUT ITS WORTH IT!
I am now on Pregabalin for over a year. It’s not as good for me as Pram was in the beginning but it didn’t last. So despite Pregab not being so good, ITS WORTH IT!
Hand in there friend!
Hi Skippingliz
I have been through it too. I'm now on methadone and doing OK. But I had to sell my business because the severe sleofep deprivation. Just wondering how you are?
Much love
Report on DAWS :: It's been over 7 months since my list dose of ropinerole (after a 12-month taper). *RLS is 100% controlled on 1mg buprenorphine.
*I am still struggling with depression and fatigue. I still feel very flat. I lack motivation. I no longer look forward to anything. I do the bare minimum to get by.
* Up until 8 months ago, I swam 3-4 times a week. I owned 2 businesses (and I was about to open a third one). I liked going out and traveling. Now I am a couch potato. I sold my main business, and I'm closing the other one this month. I've also lost quite a bit of weight because I don't have the energy to feed myself. I'm now underweight, and I look ten years older.
I should add that I see one of the top RLS doctors in the world, Andy Berkowski. I am also in therapy and on an antidepressant. My iron levels are on the high end.
I'm giving it a year. If I don't improve in the next 5 months, I'm going to go back on ropinerole. I wish I'd never started taking it.
Liz, instead of stopping the Bup and going back on a DA, how about switching to Tramadol? Strange that Berkowski switched you immediately to Bup? Sorry, but I’m no fan of his. I feel (and I’m probably alone on this one) that it’s all about the $$$ with him, not the science. But if he’s willing to hand-out opiates, as is Dr. B, then he’s worth something. How nice was that “concierage” office? Here’s someone who went down the Tramadol route after the DA. A lot of people found success with Tramadol except maybe people who had ultra-severe RLS even before the DA:
Boofoo71 profile
10 months ago
You can do this, honestly. Unless someone has been through withdrawal from Ropinerol its pretty hard to understand your fear. Ive just done it after over 15 years and severe augmentation. I appreciate you anxiety and apprehension. I was a lot more prepared this time after putting it off forever. I have PTSD also and even though everybodies information is helpful, we are also individuals and we will react differently. My personal goal was just to get off Ropinerol. I dropped down about 1mg over each week. I was on 4mg sometimes 6mg! The first 3 mg weren't too bad however I changed a lot of my diet, less sugar, less fat and less dairy and was prescribe a high dose of iron as I was low. Sorted out my sleep hygiene, nothing to eat after 8pm, warm shower, an electric blanket (on low), lavender spray and I also listened to music or an audio book. No phone distraction. I told my family I was withdrawing so just to ignore my need to be grumpy and tired. The preparation certainly helped me. My last 1mg was a bit tougher and about 4 days after, albeit not as bad as I thought. Believe it or not I'm still on ZERO RLS meds. Just my iron, sage, red clover, sertraline 100mg and 2 x tramadol at night before bed. I think the tramadol certainly takes the edge off. A more organic approach certainly got me through it and preparation. I feel its not just a medication change we need, its our triggers also, food, alcohol etc. I wish you all the luck in the world, I have zero medical knowledge and this is just my own personal journey. You can do this. I feel amazing. I will certainly pray for you. If you have an alexa, put it by your bed as I also play biblical meditation, and sleep hypnosis. Help your mind as well as your body. God bless you on your next journey to freedom from this awful drug! 💕
Liz, you might want to reach out to her.
I’m so sorry to read this Liz😢 I certainly can relate to your desperation, but please never go back to a DA! I definitely had those urges to go back to taking Neupro. It was very difficult and some nights I did take ropinerole a few times and felt horribly guilty about it. It has been almost four year since taking my last DA. I still have uncontrolled episodes of crying( no reason for it). The agitation, anxiety, severe depression, lack of motivation are a thing of the past. You can do this. It may take awhile but you will get there. I too have seen Dr. B and he is wonderful, supportive and knowledgeable. Does he have any suggestions for you? Please hang in there. I’m sending strength your way🙂
Merny, may I ask how much is that non-refundable, non-reimbursable annual fee that Berkowski charges? Is it true you have to then pay for services upfront and bill insurance yourself? I only found one paper he’s ever written, but I didn’t look very hard. When I saw he’s a paid endorser for every new vibrating plate that comes out, as is the original Dr. B (ie Relaxis) I gave up looking for papers. These two make darn decent money as internists (neither are neurologists, right?) but no where near as much as surgeons. So they make up the difference off the backs of sick and desperate people. Relaxis pad doesn’t do squat for RLS and these guys knew it wouldn’t. Dr. B (the original) paid upwards of a million dollar fine for endorsing a mouth spray that would end snoring knowing full well it would not, called Snore D. I consider sleep apnea a potentially life threatening illness if not properly treated. I resent the two of them to no end. Stop playing tennis, go back to medical school and become a surgeon if you’re that desperate for money.
Looks quite nice:
Edit: Berkowski is supposedly a neurologist while the other guy is a pulmonologist.
Here we go, here’s a “scientific” paper by Berkowski. I’ve never seen a true paper with less than 40 citations. This guy has 5 citations - two of which are other papers on the TOMAC device. Pathetic. pmc.ncbi.nlm.nih.gov/articl...
Thank you for your message. I appreciate your advice and support!
Dr. Berkowski is nearby, and he is the only provider I could find that was willing to switch me from a DA to an opiate. He told me that Tramadol, while it is an opiate, also contains a second type of medication that I do not need, so that's why he does not usually prescrbe it for RLS.
I'm hoping to find a different provider so that I know longer have to pay his high monthly fees. I didn't realize he had endorsed gimmicky products. That's too bad. He seems to be very scientific. I had severe augmentation when we started, and he has managed to get my RLS under control. (I just wish my mental health hadn't taken a nose dive). If anyone knows of another Michigan doctor willing to prescribe opiates, please let me know.
Ok, I’m glad you’re switching. And right now that extra ingredient in the Tramadol would be perfect for you. It’s an SNRI, which is similar to an SSRI, and both are antidepressants. I LOVE that it has that added ingredient. You let him know you feel like crap and want to trial a weaker opiate. It could also be codeine. I don’t understand him. I don’t understand why he wouldn’t try one of the weaker ones first that have waaaaay less side effects. You gave that man a good chunk of money - please make him pay dearly. What does he say when you tell him you feel like crap and never did before and that it was like a light switch when you started the Bup?
Liz, I jumped to a conclusion regarding the Bup - that it was the source of your fatigue and depression. You probably know this, but it could also be part and parcel of withdrawal from the DA. I think Twitcher707 gave tramadol a shot instead of Bup. We should see what that member’s outcome was. Plus, if it is DAWs, then time is your best friend. The body heals slowly, but steadily. Try to give it time to get back to equilibrium.
Thank you so much for your support and kibd words. It really helps to know that other people have managed to get through this. ❤️
Opioids for pramipexole withdrawal – DAWS
I need some guidance on DAWS.
How do you cope with DAWS?
After recovery from DAs augmentation
