RLS. Sufferer for over ten years

[Debsamuels]

Hi there. My RLS is at night and I often feel some anxiety and expectation that it’s going to disturb my evening. It’s a vicious circle both physically and mentally. A battle. I take ropinirole and having to increase it due to augmentation. Trying to hold down a career it’s hard. I’ve had a slight breakthrough. My distraction technique has worked through knitting I often knit at night and cable to keep my brain stimulated This helps a bit I sleep til the magic 2.30am then in trouble again I have avoided night shifts due to the side effects of ropinirole but having to fight my case RLS is a massive issue but for those who don’t understand it they think it’s a cop out of night work

[Hidden]

Hello.

I hate being quoted myself, but you did write

"I take ropinirole and having to increase it due to augmentation. "

If you have augmentation, which I see you may have had for months, increasing the dose of ropinirole will make the augmentation worse, not better.

The more you increase the ropinirole, the worse the augmentation will get

The only real way to deal with augmentation is to reduce the dose and preferably, stop it altogether.

You have been advised this before.

It's true that there is a vicious circle whereby you come to fear not being able to go to sleep, get anxious about it and consequently, cannot get to sleep because of your anxiety as much as because of your RLS.

Two things can help you with this situation

1 - Deal with the augmentation by following the advice about this.

2 - Explore strategies for relieving the anxiety. There are lots of these you will be able to discover online.

Gabapentin can be used to replace the ropinriole and is known to reduce anxiety and help with sleep. Best to start this before reducing the DA.

A benzodiazepine may be of some help in dealing with anxiety and insomnia, temporarily, whilst withdrawing from ropinirole, as initially these may get worse.

You might plan to take a few weeks off work for the final stages of withdrawal.

[Lapsedrunner in reply to Hidden]

Hi Debsamuels,

You really only have one option and that is to get off the ropinirole, slowly. That’s not what you want to hear but Manerva is right. Good luck

[Debsamuels in reply to Lapsedrunner]

Thanks.

[dklohrey]

I have been on ropinirole for about 25 years. I started out at 2mg and had to raise it to 3mg about 2 years ago as I was starting to get rls symptoms during the day. As you say, probably augmentation. I have been able to stay on the ropinirole and relieve my daytime symptoms by wearing compression socks. The socks were suggested by a doctor to an associate of mine who had been suffering from rls. Like all things with rls, the socks work for some people and not for others. The socks should only be worn during the day. You might find as I did, that the ropinirole becomes more effective as you wear the socks. Some other suggestions, which you have probably already heard, take a hot shower before bed, avoid caffeine, alcohol and sugar.

[Trikkinoy]

I agree I am not sure how long you have been on requip, but mine started turning on me after about 7months, but during that time I was told to increase. I did not know better and I am learning this the hard way and trying to get off now......It’s pure HELL. The more you increase the longer it’s going to take to get off and you will be in HELL even longer. Sounds like you need a doctor that knows what he is doing mine did not and now I am in this mess! 😩😩😩😩😩

[Heatherlss in reply to Trikkinoy]

Me too. Some 8 months for me. Now I am being told to increase the dose or just take it in the afternoon if I'm having symptoms during the daytime/afternoon as well.

How are you doing now ?

[Trikkinoy in reply to Heatherlss]

I am in augmentation so bad that I am having RLS all day. I cannot sit very long at all and now have leg pain too. My problem is the doc I was going to changed me to a patch that is a dopamine product too (Neupro) I have stopped the patch and went back to the requip. I am having a hard time finding a doc that knows how to treat it. They keep trying to put me on meds that aggravate it. How much requip do you take now? Try to get someone at the very least to put you on Gabapentin it will help some. I am going to start trying to wean myself until I can find a doc that can help me. I tried cold turkey, but I almost came out of my skin.

[Heatherlss in reply to Trikkinoy]

I did not increase the dose although my prescription does tell me to. Funnily enough, my neurologist initially did ask me to stop DA and take Pregab 150mg but when I told him I couldn't stop it, he said well then supplement DA with Pregab. This helped me for a couple of months but now not so much. I have been given Tramadol on an emergency basis, which happens like every couple of days. I, myself, am on a lookout for a doctor who is atleast willing to discuss. But I will not increase the dose unless someone who really knows what he is doing tells me to.

[Trikkinoy in reply to Heatherlss]

You really need to get off I know it’s scary. It’s scary for me too, but what I’m finding out is that once you augment you have to get off dopamine. I started googling RLS and augmentation it will give you information you could pass to doc and inform you too. I believe there are things here to read on this group too. As long as you are on dopamine it’s going to get worse........SORRY 😩😩😩

[Heatherlss in reply to Trikkinoy]

I know!!! I have been on this road before. I had tried staying off dopamine meds for 2 months. But sadly, my RLS did not settle even an inch. It was all night along during those. So uncharacteristic of how my RLS was even before I had begun the meds. But at that time, I hadn't augmented. This time though, I am in mild augmentation and thus have to get off them.

[Trikkinoy in reply to Heatherlss]

Also I think pregab is good too and can help you get off, but they may need to increase? How much requip do you currently take?

[Heatherlss in reply to Trikkinoy]

I am taking pramipex 0.0625mg (having cut it down from 0.125mg supplementing it with Pregab 150mg). I cut it down 3 months ago. And it did work relatively well for 3 months.

[Trikkinoy in reply to Heatherlss]

At least it’s a low does keep pushing to get off. I understand that once we get off dopamine and get on the right meds it will change our lives!! I’M so READY!!

[Heatherlss in reply to Trikkinoy]

Yes, ever since I found out that increasing the doses causes further problems I have been so cautious of increasing it.

I will try to get off them in a couple of weeks time hopefully. HOPEFULLY.

I wish the same for you. What do you take currently ?

[Trikkinoy in reply to Heatherlss]

Currently Requip 2.5mg I take 5 pills a day at .5, but cutting tonight to 4 pills since I changed from the patch yesterday and it was a 24 hour patch! 😩

[Heatherlss in reply to Trikkinoy]

Oh my! Good luck. Keep me posted.

[Trikkinoy in reply to Heatherlss]

Sure will........WE CAN DO THIS!

[Buckem]

Hello, I know exactly what you are going thru as well as most of the people who read these. Can't knit but if works, who knows? Usually at 2:30 I'm dancing with the island in the kitchen. Knitting would be easier. Take Manerva's advise she (I think she) knows what she is talking about. I went to my neurologist armed with information I picked up from her and it made a difference. If you read some of the posts here you will see many people have had this problem since childhood and now they are adults. Imagine that!! Hang in there. Lots of help available here.

[Amrob]

Have you considered increasing the pregabalin while you're coming off the pramipexole? If it worked for 3 months then didn't, it could be a dosing issue (as well as likely continued augmentation from pramipexole). I need at least 250mg of pregabalin to alleviate my symptoms.

Manerva offers you some very sensible advice.

[lauriefontaine67]

I have suffered terribly from RLS. I tool requip for a years and it helped a bit. But now I am taking magnesium twice a day and it has really helped. I get it through Amazon, its really cheap and has worked wonders. Hope this helps! Give it a try

[Runedrun26 in reply to lauriefontaine67]

How much mag do you take

[neoIDjoe]

I’m curious if any of you have seen any correlation with eating grains and rls symptoms.

Years ago my legs were getting uncomfortable tingling starting at my ankles and eventually working into my mid-thigh before I finally cut all grains. This slowly reduced the symptoms back to being normal. Mainly overeating corn chips these days will cause a flareup of hot feet and mild rls.

I’m hopeful that cleaning up ones diet could be beneficial in this matter.

[Madlegs1]

There is an article by Dr M Buchfuhrer on management of augmentation.

This may be helpful to print and give to your various doctors, if they are prepared to take notice.

I'm sure you can Google it, or hopefully Kaarina can put up the link.

I get so frustrated at the ignorance of doctors on this subject. I presume at least 10% of their patients suffer from rls, so you'd imagine they would be open to learning the basics about it.

Good luck to all of you.