Anomaly

[Heatherlss]

Hi guys,

After being in mild augmentation and having been on Requip (0.25mg) for just over a month, I started getting symptoms early morning, every afternoon and atleast 3 breakthroughs at night. This is when I also took tramadol 20mg, Pregab 150mg. With such discomfort, I decided to try a drug holiday well because I'm not too optimistic about getting past withdrawal symptoms.

For me, though, withdrawal symptoms come into effect after 1 week or 10 days. I can easily get through the first 10 days with 100mg tramadol and 150mg pregabalin with around 5-7 hours sleep every night. However, since this is my 3rd attempt, I very well know what comes after those 10 days. That is when my symptoms get worse and I can't seem to get them under control with the same medications that work so wonderfully for 10days.

Last night, I tried CBD capsules (2:1 THC) and had such terrible headache that I am almost certain I'm never taking them again.

With this pandemic and lockdown, it is impossible for me to schedule and IV Iron session even if I can convince my neurologist. And most likely, I will go back on the DA in the coming days because I know I won't be able to sustain with the symptoms. However, a part of me just doesn't want to go back on DA.

I want to know what you guys would suggest.

[LotteM]

Hi heather, yours is a truly weird situation, with withdrawal starting not until 10 days after the fact. Obviously, you're in between a rock and a hard place. No fun.

I know that 25mg is the lowest available standard dose. Have you tried reducing in smaller steps by cutting the 25mg in half or even in quarters? If you succeed in the latter, you can reduce far more slowly. Just wondering....

Also, if you want to try to take this route, you may want to try to talk to your pharmacist. Maybe, if they have the facilities, they can make you 'custom-made' pills of smaller mass, e.g. 5 mg ones. That would make your stepwise reduction a bit more precise and reliable. Given your sensitivity to ropinirole, that may be wise. When you're in that discussion, see how far they can go, if they can get as low as 1mg pills for example. If a very slow reduction seems to work, that may be helpful in your final stages.

Otherwise, I wouldn't know. But maybe others have other, more creative alternatives. I hope you'll find something that works to get you off this horrible drug.

[Hidden]

You really do have my sympathy. What's happening to you seems to be really unusual.

"Anomaly" is a really apt word for your experience

It seems that your story started about 10 months ago when you had been taking a very small dose of pramipexole for six months and it was working fine. Then you decided to withdraw from it because you were worried about augmentation but didn't actually have it.

Now you have been taking a very small dose of ropinirole for a very short time, yet say you have augmentation.

The first anomaly is that augmentation is more likely if you take a high dose of a DA for a longer time. Yet you haven't.

Another anomaly is that you describe your augmentation as "mild". Certainly symptoms happening earlier in the day indicates augmentation, but symptoms are usually also more intense in augmentation. "Mild" augmentation seems to be a bit of a contradiction.

The third anomaly is as you say that withdrawal effects for you seem to start when for other people they are fading.

I can't think of any explanation for these anomalies.

I am only guessing then that there's some other factor affecting you which is, as yet, undiscovered. It's possible that you have some kind of extreme sensitivity to dopamine agonists and can't now manage with them or witbout them.

I can only suggest you try Lotte's idea.

It may be better in the longer term, to get dopamine agonists out of your life. I 'm afraid it may take you a long time to do that and it may be hard work, but they are very harmful for you.

My best wishes to you.

[Heatherlss in reply to Hidden]

Hi Hidden , LotteM

The real issue with me is that my ferretin levels are horrendous for someone with RLS. No wonder I'm not able to find any convincing relief for sustained periods. My Ferretin levels were 24 last I checked. I have been taking gentle iron and other iron tablets for over a year now and it has dropped from 35 to 20 and now to 24( this was 2 months ago). I had scheduled an appointment with a new neurologist after talking to Dr Garcia back in Feb. He had given me hope that with the right IV Iron treatment, there is a significant chance that I would not be needing medications.

However, I am unable to explain to anyone including myself why I get the withdrawal symptoms after 10 days or so.

I will be looking into going back to DAs but with an even lower dosage. I had augmented on Pramipexole after 4 months. I started getting symptoms in the afternoon and evenings. I cut the dosage into half and did well for 2 months and then again had trouble that is when I stopped and after 3 week hiatus, switched to Requip at 0.25mg. However, right from the off, I could never find significant relief with Requip.

[Wendy1]

Oh bless you! You are really going "through the mill". When I began to augment with Requip, I started to take Holland and Barrett Gentle Iron as prescription iron tablets did not suit my stomach. I also read that Magnesium helped so I take Holland and Barrett Magnesium Citrate 400mg x2 daily. I had tried so many things which did not work. These tablets have helped - not cured - but really helped. It sounds like you need a higher iron intake. Good luck, we all know how dreadful RLS is.