Has anyone successfully weaned off DA... - Restless Legs Syn...

Restless Legs Syndrome

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Has anyone successfully weaned off DA meds and feeling ok

mmb8083
mmb8083

As I awaken every morning around 4am I immediately go to this site in an attempt to read everything and anything I can to help me with this awful disorder. Thank you so much for all the helpful info. It has given me some tools to hopefully get a few hours of sleep here and there. I thought things were bad before I saw a sleep specialist and started on Mirapex (total horror) then moved on to recuip which is only slightly better as far as side effects for me. At first it was magic, I could sleep but then the ugliness of these drugs started. I wish I knew then what I know now as I would have never started down this path. Looking back things weren't even as bad as they are now. Some sleepless nights were better than what I am going thru now. I see now that my sleep specialist doc is totally unaware of what these drugs can do to you. I feel I am a totally different person. Moody, weight gain and of course the augmentation. Saw a neurologist who introduced me to gabapentin which seemed to undue everything Zoloft has accomplished for me in the years I have taken it. Its the only thing that has remotely helped with my apparent lack of serotonin. Never once did either of these specialists warn me of what was to come. I have made it a point to get as much knowledge as I can and am trying to handle this RLS torment the best I can. Taking a high quality magnesium malate and easy iron. Ferritin level is 70. TSH now slightly elevated at 4.62. So my question is, has anyone weaned off of DA's and went back to their pre dopamine antagonist life and found it more tolerable than dealing with augmentation, anxiety, restless body etc.

21 Replies

I came off mirapexin 2 years ago after augmenting on it. My rls is not as severe as some - I mainly get it in my legs, I only get it at night and it is not painful only deeply uncomfortable but it is unrelenting - I get it all night every night if untreated and I get no sleep.

It has been a struggle to find a treatment that controls it and yet has manageable side effects since coming off the d/a. BUT I am, and have been since I discontinued the d/a, DELIGHTED that I came off it. I became myself again and felt like I had control over my life. It was certainly the right thing to do.

I just asked and was given a script for tramadol ER 100mg by my neurologist to help me get through my DA tapering and withdrawal. I have not started yet but will be in coming days. I am nervous about the process. I got a taste of what nights are like when taking no recuip at all and the hell was beyond words. First time I did not take it was due to being called out to an emergency for family at 7pm. I rushed out forgetting my pill and ended up pacing and in pain while staying with a family member in ICU for 12 hours. The second time I did not take it due to the same scenario of leaving the house without my pill the same anguish took place. So I do have an idea of what's to come although I will be tapering ( hoping the tramadol helps with that) and not simply not taking anything. There again had I known just how excruciating it would be to take and then attempt to get off of Recuip I certainly would never have started.

That must have been pure torture - pacing in icu with intense rls. It is certainly a good preparation for the misery of withdrawing from requip! It is definitely better to taper down. It would be optimal to save the tramadol until right at the end. After the last requip pill there is a period of intense rls which usually lasts about 10 to 14 days and that is when you will need the tramadol most. I wish you all the best. You will not regret it in the long run.

My Dr just gave me pramipexole .25mg daily. Instant relief of restless body not just legs, 3 to 4 hr wrestle every night. So life changing.

I am pleased the pramipexole is working for you but it is a good idea to inform yourself well about that drug from an early stage. Read through some of the posts in here about it.

Pramipexole is a dopamine agonist drug - the D/A referred to in the original post. It usually works like a dream to begin with but over the years it reduces in impact and as the dose increases it almost always results in a dreadful phenomenon known as augmentation. The pramipexole (or any of the other d/a drugs) will effectively start to feed the condition and make everything MUCH worse. The only solution is to discontinue the pramipexole at this stage. Unfortunately, process of withdrawing from pramipexole is incredibly difficult once augmentation sets in with really intense rls all night and all day. Often there is absolutely no sleep possible (it is not even possible to lie down) for days or even weeks. The impact is so bad that US rls experts now recommend against using pramipexole to treat rls but suggest gabapentin or pregabalin instead.

It is worth being aware of this when starting pramipexole as you might save yourself some suffering later. There is a suspected link between low iron and augmentation. Make sure your iron levels are high - get a serum ferritin test at the GP (they should do this as a matter of course when treating rls) and make sure to get the actual figure - not just that you are normal- normal for rls is very different. You want to be over 100 ideally.

Also make sure never to increase above 0.25mg if pramiepex. That is the upper limit now recommended by rls experts. Personally I would not increase above half of a 0.125mg tablet (ie 0.625mg) as there is a link between increasing the dose and the onset of augmentation. I would get the GP to prescribe a different drug such as gabapentin (nb be very sure it is not another dopamine agonist drug) if symptoms start to break through - which they will eventually. No one ever stays on the lowest dose of pramipexole.

Thank you for the info. I didn’t realize this and will definitely discuss with my Dr. I trusted her as she does not give out medication easily.

you will do good if you listen to dancer, after talking to her about ropinirole and Pramiprepsol I decided to come off them, not at same time of course., I am now off ropinirole and thank god I did, I awoke about three days ago to a very bad case of double vision. now have to wait for appointment to see Dr again.

Another thing some people might want to look at. I have noticed when I get rls is when I have been sitting on a hard comp seat or if I go for a pint sitting on wooden bar stool that brings it on very quickly. Iam a bit on the heavy side so sitting on my bum on the two large bones, think in the us you call it butt.

maybe it's nothing but if enough people check these type of thins we will never know.

night all its one in the morning here.

god bless all/

I came off ropinirole 2 years ago and it was hell! I don’t think any doctor has a clue about how difficult it is.

I managed with the help of Tramadol and continued on that for 2 years until it lost its efficiency. I’m now on 150mg of Pregabalin and 5 weeks in it is going well.

It took several weeks after stopping ropinirole before I started to feel like my old self, it wasn’t just the restlessness, I had anxiety and mild depression.

I’m never sure if I got back to pre ropinirole days, it’s hard to say as it’s a progressive condition anyway. But once it was fully out of my system I felt so much better and I’m happy and sleeping well with Pregabalin.

Obviously there is always the worry that it will stop working and what to do next but I try not to look too far ahead and accept each good night of sleep as a bonus.

Pam

mmb8083
mmb8083 in reply to Pam34

Yes I long to get back to my pre Recuip life. Makes me question why any doctor would prescribe it at all. They obviously havent gone through the life altering misery the dopamine antagonist meds can cause. Mirapex was my first go around with a DA which worked for a month but then the mental and mood changes kicked in. I didnt even feel human anymore. Dont think I could have added 2 plus 2 during that time. Working was difficult because I just couldnt think of even the simplest things. Sleep was a precious commodity before my vicious journey started but I managed as it wasnt every night and wasnt much of the day as it is now. That 3 or 4 month period of somewhat better sleep I am paying for dearly now trying to get off of this horrible drug. How I wish I knew then what I know now.

Pam34
Pam34 in reply to mmb8083

I feel for you but at least you know you are not on your own. Lots of us on here have been through it and there is life on the other side of ropinirole. Honestly!

Although I perfectly understand why you feel as you do try not to let the bitterness take over. You are going to need all your strength and energy focussed on getting off this drug. Take it one day at a time and take strength that you will come through it and you will feel better!

The main thing is to take it very slowly with the help of a low dose of opioid like Tramadol. Read up about it all from the RLS-UK website so that when you see your doctor you can keep calm and speak with knowledge.

Good luck and let us know how you get on.

Pam

I came right off them in March this year, after having been on all 3 in succession over a period of several years. The withdrawal was horrible and took 4 months. I needed with Tramadol to help. I now feel more like my old self than I have done for years.

I am on Pregablin and Tramadol. It’s working ok - not perfect, but enough for me to enjoy life again.

I was on pramipexole for 15 years but then augmented in December last year which was hell. Now I manage with Kratom which really helps which I limit to twice a week. Once a week I may take a sleeping pill to help if it’s badbut otherwise I can manage with the odd bad night knowing I will be ok the following night. I feel much better now that I’m not on the da’s and feel more in control.

Ert223
Ert223 in reply to Lenilatt

I tried the Kratom but it is not that effective for me. I prefer the norco 60 mgs per day.

15 mgs of diazepam.

4 mgs of klonzapim'[

200 mgs of lemuctil.

and have 2 hits of medicinal maryjewana...that adds a real nice quick fix while waiting for all the other stuff to kick in/

20 years ago I knew of no one that had RLS and now about 2 out of 10 got it why is that.

Round Up aka agent orange in all the food supplies. GMO EMFs....yep out govt is taking real good care of us.

From reading the posts here which I really appreciate - I am totally sure I will not take any dopamine agonists - my RLS which I have had from youth has with a careful diet remained manageable. My doctor wanted to put me on drugs but I tend to feel they are ignoring the fact that these drugs are as bad as opiates in my opinion in that it is short term gain and long term pain. I am so glad I have been forewarned before I go on these very dangerous drugs.

Ert223
Ert223 in reply to Goldy700

What kind of diet are you on? I have tried them all to no avail?

Please let me know.

Goldy700
Goldy700 in reply to Ert223

Ert223 I am on a low inflammatory mostly alkaline diet. I do not have gluten, if I have dairy it is A2 such as goat, sheep, jersey. I eat lots of coloured vegetables and salads, no sugar and that includes high sugar fruits, I love berries, green apples. I eat olive oil, coconut oil, avocados. I have grass fed meat but not a lot and small ocean fish, sardines. I have sauerkraut and kefir. I drink filtered water. I am 69 but on this diet I stay OK. I do have to take a hot shower once a night but I am able to sleep after that. I take Taurine as calming, Tyrosine as helps increase dopamine, vitamin C, E, D, methylated B vitamins, gentle iron and fish oil. I am getting my iron levels up slowly. I always drink a lot of water with lemon juice in the morning to flush out my system. So far I have no pains, no arthritis, and can run and walk 4 -5 kms a day. I do think it is important to avoid processed foods and all the hidden artificial chemicals they contain. It becomes a way of life but god forbid the escalating path of going on those pharma drugs though I understand why people do it.

Ert223
Ert223 in reply to Goldy700

I have been on 60 mgs of Norco for 5 years.

valium

klonazapam

lemictul

and 2 hits of medicinal marjuana. The opiod crises is just a bunch of polictical nonsense

they go after the Doctors and the Patients when they only make up less than 1 percent]

of the hundred thousands deaths per year of opiate ods...an all of that could be prevented

if they made it mandatory that all pharmacy in all states had to sell you the nasal spray

that you spray in your nostrils and it blocks the opiod receptors...But the politicians want

to throw everyone in jail to make money off of privatization of the jails.

Pennsylvania is the only state where you can buy the spray without a prescription.

Walgreens in Illinois say that they do the same thing called them and they said well

duh yeah but you have to bring the person who OD down to the Walgreens and if

they say you get the spray or you dont...Bottom line if you OD by the time they get you to Walgreens your dead...

Yes there is one Wellbutrin that i believe works on the Dopamine section in the brain.

Do not get on the ones that effect the serotonin...I had some real stupid Doctors that did

that to me...Oh you think the regular pain with RLs is bad wait till you mix a lil serotonin with it...it like living in Dantes Hell with big bird slowly consuming your flesh...

I was on pramipexole and 25 mg of oxycodone daily. I started to back off on the pramipexole, and the withdrawal was very difficult every time I reduced the dose. I suspect it would have been impossible to do without the oxycodone. When I got down to one pill of pramipexole, I was introduced to kratom. In one day, I dropped both my last pill of pramipexole and the oxycodone (which I had been taking for a couple of years), without any withdrawal symptoms at all. And, the kratom managed my RLS symptoms better than the above two meds. That's the only thing I currently use to mitigate RLS symptoms.

Hope this is helpful.

Doug

RLS is a chronic disease that can be caused by many things.

Magnesium helps some but make sure it is balanced with pottasium

that works for some. I use because the magnesium prevents constipation and it repairs your cells from roundup(really agent orange). most countries have banned it except the good OLE USA.

I started out on Clonazepam felt like I was in heaven...They have 2 types Quick melts that do not put your head in the mashed potatoes and gravy. The hard type makes you tired and feel like a zombie much like gabapentin not as bad. Helps you sleep.

Then I went on to Norco because the pain set in...have been on it for 4-5 years love it...out of all opiods it does not make you tired;;;Yeah you can function during the day your not draggin around like a Zombie (my doctor ask me if I wanted to get on methadone I told him I would take a pass. Then my legs went crazy set up like concrete talkin bout pain.

Then went to a vein clinic had a bunch of bad veins and they collapsed them...they use a painless laser and injections. Once the veins were destroyed the concrete legs went away.

Then I went out and spent 450 for a Near infrared light (NIR)...they do sell cheaper ones

for like about 30 dollars...I find that when I hit a brick wall the NIR helps the norco do its job. And gets rid of the pain and the snakes/spiders/crawling worms/the whole nine yards. If you get a NIR I use the LED ones not as hot..make sure it is red light not blue. Also make sure the NIR light is in the range of 850 hz +...any thing less will not work. Red light in the 700hz range does nothing (yeah sounds like a bunch of hog wash..put this is the thing that bio-physicist with PHD's do. Some feel you might be able to correct a lot of physical problems with certain lights by the color and the frequency)..Take Iron Bisglycinate...that is the only one that will pass the blood brain barrier. The theory here is that the basal gangliea in the brain has a spot that needs iron. For some reason some folks cannot get the iron in there...that is why they do massive infusions of Iron into the blood stream to get it into that part of the brain. That much iron is not very good on the rest of the body; Oh yeah almost forgot Kratom 3 types red/green/white. The white will stimulate you like coffee (no crash like coffee) ...The red is for night time sleeping. The green is a combination of both. Problem with Kratom is that your not sure of the quality of it. Another theory is that gaba in the brain that is what gabapentin does..If you take an amino acid by the name of Gaba it will not pass the blood brain barrier..so some say no good..Now if you get the amino acid Taurine it will cross the barrier and will convert into Gaba...Stay away from sugar it aggravates the RLS for me. Also any synthetic sugar.

Also stay away from soft drinks...the diet ones are neuro toxic which means...it over stimulates the nuerons in the brain and burns them out. The opposite effect of Gaba.

MSG does the same thing burns the neurons out. Makes your legs go grazy. I also use an earthing mat...For an experiment when the legs start jumping go out in bare feet and hug a tree. I find that when I sit next to a Television set which gives off EMF...electro magnetic field my legs start jumping. So if I am sitting round betting on the ponies (do I make any money only by mistakes...but that is another story) I am trying to think of something else..

Oh yeah masterbation or sex...will stimulate the dopamine receptors in the brain and help with the RLS. I also use a machine called the Rebuilder it claims electrical stimulation at 7.35 hz i believe it is will get rid of Neurapathy which goes hand in hand with RLS.

It relieves the pain in my feet. Some folks say meditation...pretty hard to think about nothing while staring at the wall while your legs are driving you crazy. That is all I can think about now. Just remember that Doctors are not always looking out for your health that is why they prescribe drugs that give you bad side effects like augmentation. The pharmacueticals push the newer drugs in the USA because big pharma makes alot of money off of them. They give doctors that prescribe these drugs...trips to the islands

cash you name it. Well we have laws in the USA that say that they are not spose to do it but hey when there is money involved who cares. Big pharma in the USA was pushing oxycotin as a non addictive drug...based on a theory by one of top pain specialist

when it became apparent it was not...Well the CEO and the scientist they hired to say this. said they were sorry;;;no jail time. So when the Doc suggest taking drugs you better investigate them first. Good luck and i hope you find the holy grail to rls and if you do please let us know and not go in the business of selling it unless you make me a partner.

.

Yes. It wasn’t fun but I am now rls free during the day. I take gabapentin at night and occasionally get rls which I can actually sleep thru- I will wake up and have it briefly and be able to fall back asleep easily.

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