Some of you may be familiar with my story but here it is in brief. I was diagnosed with RLS about 30 years ago. I was prescribed Premipexole. It worked for the first few years but became less effective over time. My doctor kept increasing the dose util I was taking 6mg. (round about 12 times the recommended maximum dose.
I have spend the last 6 years trying to cut back. Bit by bit I got down to 1.25 mg. Then I hit a wall and have spent the last two years or so trying to cut down One thin slice at a time. I never made it beyond 1mg. Every time I would be forced by circumstance to increase the dose again. It was a horrible and thankless task.
The doctors here in Canada know very little about RLS. I was refered to a neurologist who claimed to be an RLS specialist. After 1 year He told me that if I didn't get off Pramipexole in the next six months he would no longer treat me. He said he has patients going Cold Turkey all the time and what am I waiting for.
We rented a cabin in Mexico. I stoped taking Pramipexole. I purchased extra Tramadol which I had hitherto used only sparingly to help me cut down. I didn't sleep much but it seemed as if I was winning. I even had a 12hr period with no symptoms. Bliss! I figured the withdrawal would take about two awful weeks. After 3 awful weeks the symptoms returned. I was quite sick and we returned to Canada. It is now 8 weeks since I last took premepexole.
My life isn ow a living hell. I have debilitating Nausea one day, debilitating anxiety the next and Chronic RLS the next day. Sometime all together. I suspect that I am getting addicted to Tramadol. I am taking between 300 and 600 mg per 24 hrs. Very little sleep despite taking 7.5 mg of zopiderm. I am taking 1200mg of Gabapentin. I don't think it's doing much but I take it just in case.
My life is falling apart. I'm 75 yers old and have an international art career. I gt married last year and I have 2 wonderful grand chide age 6 and 9years old. I love them all dearly but I am close to despair. I have read about DAWS. Do I have it? How long will this last? I wrote to DR B in the USA but he has not replied. I feel my options closing in on me. I expect I am now addicted to Tramadol. I can't even imagine cutting down. I have tried Buprenaphine in the past but that was when I was still taking perm but it made me sick, though it was better than I have now.
I am feeling like I want this to end. I don't know what to do next. God knows what they will do to me if I go to casualty!
Please can you help me?
My very best wishes.
Written by
welschrispy
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How were you sick? Was it nausea? I gave you some suggestions for that. Did you try them? The best of them is zofran. Another suggestion is to take cannabis. Joolsg did that and after a week it was gone. In general the side effects settle after a few weeks and you say it wasn't as bad as it is now.
One site said the nausea goes away after 3 to 7 days.
Tramadol is not the best option to get off Pramipexole as it is the ONLY opioid that also causes augmentation.
You said you tried Buprenorphine, but the nausea was too much.
The nausea is treatable. Get medical cannabis oil with 20% THC or Zofran.
The nausea does overwhelm many people for the first week, but then it settles.
I used 0.3ml cannabis oil every evening for about 10 days, then slowly reduced and stopped. My nausea had gone and has never returned.
So ask for Buprenorphine again, but use cannabis oil or Zofran for around 10 days to stop nausea.
You were on an extremely high, extremely negligent dose of Pramipexole and it will take around a year for your dopamine receptors to settle and calm down. If you're on the right treatment that stops ALL RLS and allows you to sleep and rest, the healing will happen more quickly.
You can heal. It will just take time.
The average dose of Buprenorphine is 1 to 1.5mg. Start at 0.5mg and increase to when the RLS stops. The nausea will stop with medical cannabis or zofran.
I fully second Joolsg reply. One other suggestion: instead of buprenorphine you can also ask fir methadone. Both a long-lasting opioids that are the preferred opioids for RLS. If you can get and start either of these, you will have to make a clean switch from the tramadol. Things should be (far) better than this. Hang in there!
Oh, Welschrispy, I'm so sorry for what you're going through. One thing I did not understand, what is DAWS? I googled it and it sounds like some sort of art application. I understand that you feel at the end of your rope, and it's so frustrating that doctors don't understand the impact of RLS on one's quality of life. There have been times I felt that I no longer wanted to live with this disorder. I'm a Catholic and firmly believe I don't have the right to take my own life. I don't have the answers as far as drugs and doctors. I will pray for you, that your symptoms will lessen and that you will find a good doctor. Your life matters, even with this awful disease. Know that I'll be praying, and will ask others to do the same!
I am very settled on a very low dose of pramipexole and targinact which I'm not sure you can get in Canada. I am withdrawing very slowly from pramipexole. Targinact is an opioid and I am not dependent.
I'm sorry to hear all of this. I've taken Tramadol for back issues and I find it makes me nauseous, gives me blinding headaches and stops me sleeping... not always, but it does sometimes. That's even on half a tablet too. The nausea hits if I take it without eating. I'm not saying this is the cause, but it's possible thr Tramadol is making things worse?
Hi, I am so sorry to hear about all your issues that you have experienced. I have suffered with RLS for a few years and it was severe about 2 years ago. I started taking 1-2 table spoons of unpasteurised apple cider viniger mix in glass with water for my joint issues and also Vit D supliment but to my surprise I notice it helped me with my RLS instead of joints. I did some research and I found out that apple cider viniger helps with absorption of Vit D as it contains K2 that is helping Vit D to be absorbed. I must say it never completely went away as it is occasionally triggered if I eat too much sweets especially in the evening or drinking wine but it definitely improved a lot and I could have a good night sleep. I read somewhere that some medication also could block absorption of Vit K2.I hope some of the information you may find useful.
I am so sorry you are dealing with this. I know the feeling. I went cold turkey from Pramaxepoli/Ropinerole several years ago. I wasn't warned not to stop taking my medication. I remember the day I told my wife outloud. "I am done with this."
Seriously it took several years to recover. It was a very dark time in my life. I challenge anyone to make good decisions after not sleeping for 3 months.
There are opiods that you can take that may help. I am not an expert on opiods. Talk to your doctor. Switch them.
Gabapentin helped, but was nowhere near strong or reliable enough. Pregabalin got me through.
I was a 50 year old male at the time with 5 kids at home. I luckily still have a relationship with all of them and I am still married. It was a solid touch and go for a long time.
I think the best thing you can do is take care of yourself.
Sleepmasks are very underrated. It is worth a shot. I can't believe how helpful it is for me.
Ear plugs - I now where them every night, all night. I am sleeping rather well lately.
Have you checked your iron levels. Iron does help help with augmentation. Don't skip this important step.
Don't give up, it does and will get better. Take naps, sleep when you can. Get outside and go for walks. Short ones are better than long ones right now.
Dear Welschrispy, What you are going through is horrible. I have been there myself. I remember days when I said to my wife, I don't know how long I can live with this chronic pain and lack of sleep. It is not worth it. But you can get better. Your quality of life will improve if you follow the advice of some of the knowledgable people contributing to this site. They have given me my life back. I have learned more here in one month than I did from my doctors during the more than the 40 years I have been dealing with RLS.
I had been on a dopamine agonist and a low grade opioid for 35 years. With the help of Buprenorphine, I am free of the rotigotine patch for almost 3 weeks now. It took me 3 months to ween myself but already I feel so much better than when I was augmenting. I still have RLS symptoms at night, typically when my patch gives out, but so much less discomfort than before.
Listen to the informed people on this site and try, with the help of a good neurologist, to get your meds sorted out. You can turn this around. Good luck! There can be good sleep ahead.
I have only just started taking 0.88mg Pramipexole for the Restless Legs type symptoms that are in my lower back and it is working like magic at the moment. And now I can sleep. I am praying for you because your suffering is so awful. May God help you - please, God. xx
Hi. I don’t normally ’do’ many replies as I have no knowledge of any drugs for RLS. What I do believe is that my diet either gives me hell with my legs or if I am watching my diet then my legs are great. Yep … cold turkey but on salt, choc, caffeine and alcohol especially salt.
Do one at a time but for a week stop eating anything with added salt. I grilled chicken breasts for a week and the difference in me was massive.
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