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Restless Legs Syndrome
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AUGMENTATION .... HOW DOES ONE KNOW

With all the talk on augmentation in this forum .... it can be somewhat quite scary for those of us who are not in the know and have not yet experienced augmentation.

From my understanding, (from the descriptions relayed in the forum), one of the first signs is

a) one of your medications will cease it's effectiveness;

b) one will feel the need

to increase the dosage

c) increasing the dosage can exacerbate said symptoms.

d) symptoms can increase in severity; and

e) the onset of said symptoms may become earlier than usual.

So how it was that? Pretty close to what I can expect?

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Pretty much spot on Grany. It can also move to other body parts like arms, hands, back ( and even face on my case).

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Hi Jools!

What do you do for your facial movements? All I can think of so far is putting relaxing leg cream on (and anti-itch cream for when it itches). As part of your facial movements, do you notice a part getting numb? My nose is a bit numb today and it feels REALLY weird!

Hope you're doing well,

Jessica

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Hi Jess,

I didn't find anything that helped other than to slap myself often quite hard. Luckily, once I started to go through withdrawal the face sensations stopped BUT obviously the withdrawal was hell on earth.

Once through withdrawal, the RLS was still bad but only affected my legs & occasionally my left arm if very tired.

I'm definitely in a better place. I was very intrigued by Raffs' post about veganism. I am used to following restricted diets in a bid to control both my MS and RLS. I followed a strict paleo diet for over a year ( made no difference), I've been gluten free for 20 years ( don't think it made any difference) and tried low FODMAPS for 6 months. None of them helped RLS at all BUT since following a vegan diet ( 2 months now) I have noticed a definite improvement. Instead of being woken up 6/7 nights a week with RLS I am now only woken up 1 or 2 nights a week.

I have not posted about it yet because I want to make absolutely sure it's not placebo or simply a natural cyclical change in the RLS. If it continues like this I will be adding my support to Raffs.

It could be that we all respond to different diets. I know veganism makes your whole body less acidic and more alkaline so maybe that is why it is helping. The only thing I miss is cheese.

Like you, my nights were good even when in full blown daytime augmentation. The day soon became unbearable and I knew I had to get off the Dopamine agonists.

I will never touch another until they develop one that is guaranteed not to cause augmentation.

How are you reducing the dose? Have you cut the patch in half?

Also, are you still on the anti depressant that was making your RLS worse?

Thinking of you too.

Virtual hugs

Jools xx

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Nice post, jools. Re the veganism, following up on raffs experience I have put myself on a glutenfree, soyfree and vegan diet 3 weeks ago. Few slips now and then. Unfortunately, I haven’t noticed any changes in my rls. Well, I have, but that has to do with changing my meds as I had become tolerant to tramadol. Your post encourages me to keep up the diet for a little longer. Please keep your fingers crossed for me.

The soyfree and GF parts have to do with my taking LDN.

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How interesting Lotte. Definitely stay on it for at least another month. It’s much easier now - there are so many vegan foods around. I never used to eat soya but do now that I am vegan.

Jools

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I will. I only miss my yoghurt (with muesli) in the morning. I now use coconut/hazelnut milk instead and made my own gf version of muesli. Oh, and cheese of course; being a “kaaskop” (cheese-head), a nickname for Dutch people.

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Oh God I miss cheese, (and ice cream - Ben and Jerry my two best friends :) ). Vegan cheese is one of those foods best eaten by someone other than you!!

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your two best friends? So, does that mean that Ben is one flavor and Jerry is the other? :)

Norwegians also love Ben and Jerry's ice cream!

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Do you mean to imply you don’t? I would find that hard to believe.... 🤔

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Let me rephrase. Both Norwegians AND I love Ben and Jerry's :)

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I have not started my reduction yet since there wasn't enough time between the start of the spread and leaving to go on vacation (I am visiting my folks in Oregon). I return to Oslo on Friday and meet with my neurologist next week, so I will bring all this up then.

I am on my 3rd attempt at decreasing the Lexapro. I have been at 15mg (started at 20mg) for a few months now. The next reduction would be to 10mg and is due to come up soon. Unfortunately, I might not be able to make this reduction, though. I noticed my depression seeping through about a month ago (and my psychiatrist and I were actually considering putting me back up to 20mg), so it might just be that I cannot get off this medicine. My psychiatrist knows that this medicine can worsen RLS, so we are trying everything we can to keep me from needing to increase the dose. We increased my Wellbutrin a month ago to see if that would help keep the depression at bay, but it seems to be coming back anyway. We're working on it. Balancing RLS and psychological issues is tough.

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Oh Jess, That's just unfair. I really hoped the wellbutrin would kick in for you.

Totally understand the reason for delaying reduction of the Neupro patch, the long flight needs a strong med to keep the jumpy legs under control.

I'm sure the visit to your folks has been restorative- lots of love and hugs is good for the soul.

Good luck with the neurologist on Friday.

xx

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I return home on Friday; the neurologist is next week.

Yeah, I was also really hoping that the Wellbutrin would work, but oh well. Before we increased the Wellbutrin, we tried Lamictal. That was a complete disaster, so I was quickly taken off it. Increased Wellbutrin is the substitute, but...

It's so hard with medicines.

Thanks for the good luck! I'll need it since I have a bad feeling that this "fight" I'm having with trying to get the doctors to take this 2nd augmentation seriously is not over. I'll definitely need to go in with my agenda written down since I'll be a walking zombie and will want nothing more than to get out of there and go to bed! (I don't suffer from jet lag traveling from Oslo to the States, but I need 1.5 weeks of recovery time going back).

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Jess

I take Lamictal have been on 100mg for a few years now along with 150mg Sertraline and 600mg Lithium its all for Bipolar and it works well the first 2 are for the low moid swings the Lithium for the high and all well under control its a good combo my phsycharist gave me. Sorry to read Lamictal didnt help you quite the opposite seems.

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None of it helps the RLS but maybe do you mean Lamictal made it worse..oh i hope not as it is one of my bipolar meds.

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I had other undesirable side effects not related to RLS. Sorry if I worried you.

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Not at all Jess..worry..think that has died a death now as i tend to not bring worry upon myself. Being a born again Christian i hand all over to God and He takes care of it in His way. Knowing that helps me not to worry then.

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Thank you for the input on diet.

The vegan science is compelling, but the ketogenic diet is becoming compelling too. I wondered about the profound influence on brain energy with ketogenesis.

Do you have any information on that for WED?

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I was on paleo for over a year and that was effectively a ketogenic diet.

I didn’t notice any improvement to my RLS while on it but I did lose loads of weight ( I didn’t like that because I was already slightly underweight).

I don’t have any research articles to send to you but diets affect us all differently. What works for one person does not necessarily work for another.

You won’t know if it works until you try it.

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That could be a factor in my dietary success as there have been times I've noticed ketosis as I have cut out all of the crap in my diet and with the reduction of appetite means I often only eat one meal a day and a small snack.

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I have had it in my extremities for the past 10 years so that will not be a new experience for me.

I am beginning to suspect that I am on the cusp of augmentation now but am not too overly perturbed as I now have the understanding and support of my psychiatrist who has informed me that he is not against prescribing opiates, so that is very comforting and assuring.

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Great question!! My symptoms have spread to my right arm, back, and face (how weird is that??), so I am augmenting. My medicine still works well, but I can tell that it's not as effective as it was. It took me awhile to get to the point of accepting that I'm augmenting because my nights are good. My nights are good and my symptoms start once the sun comes up, which is the complete opposite of what my augmentation in 2015 was like.

I'm assuming that by asking your question you think you think you might be augmenting. So sorry to hear that! Thinking of you!

Take care,

Jessica

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Thanks for that Jess. I definitely suspect that it is not too far away

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About 18 months ago I went on the lowest dose of Mirapex and in 6 days it was no longer effective. Because of all I read here (thanks to all you posters) I did not increase the dose and stopped taking it, but kept the pills. I waited just under a year and tried for one night thinking I would get a couple of peaceful nights out of it. It did not work at all. Apparently the body remembered it.

From all I've read, I consider myself lucky to have not doubled the dose as instructed. Yes, my RLS is a bit worse then it was several years ago, but much better than what I read about here.

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My GP told me to cut from 4 to 2 nightly then stop them..wait..and start back on 2 nightly again. I havent did it as yet because out of all my ailments its the RLS i cant heck the most i can suffer the rest even though they are cronic bit RLS beats the lot ots not only hard to stick it causes sleep deprivation which catches up on me every so many weeks when im zonked mostly all day cant keep awake hardly. I feel for all of you trying to cope with RLS and RBS unbelievable there isnt a cure or even meds that can control the symptoms for us. I keep trying to find something online but anything which hasnt been much didnt work. Ie. Anastix red vein tabs..freeze spray..heat spray..all no help.

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