Does anyone have RLS at 11am ? - Restless Legs Syn...

Restless Legs Syndrome

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Does anyone have RLS at 11am ?

Heatherlss profile image
16 Replies

Lately, I have been having 10-15minutes episodes of RLS symptoms in the morning like 11am. It doesn't last longer but it is happening. I suspect it is augmentation as I went back on Ropinerole 0.25mg after 1 month break. It worked fairly well for a couple of weeks but I'm back to broken sleep once again.

How do you cope with that ? I probably need to get off DA for good but it gets so unbearably difficult but I need some direction for the time being.

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Heatherlss profile image
Heatherlss
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16 Replies

Hello!

If I were you (and since the morning episodes are so short), I would try not to think about augmentation. Doing so will just make you anxious. I know because I'm going through something similar. I augment horribly on Pramipexole about 5 years ago. Despite this, I am on another DA. Overall I am doing very well, but I get anxious and the word augmentation pops into my head with almost every daytime twitch or bad night. I am working on erasing that dreaded "A" word from my mind. If it happens it happens. And if it happens, at least I'll know the word for it (unlike the first time). Until then, I will just live my life. We can't live in fear -- it takes too much energy.

I hope this helps somewhat! Sorry if it doesn't.

Heatherlss profile image
Heatherlss in reply to

It does make sense. I am also so sorry that you suffer too. I wish I could be of some help. So tired, so exhausted.

in reply toHeatherlss

Oh hon. So nice! But I'm fine...really I am. I wasn't when I augmented, but now I'm fine. I do suspect some PTSD from that, which I think is why every movement makes me think back. If you want to talk about anything at all, my inbox is open.🙂

Madlegs1 profile image
Madlegs1

You well know what you need to do. It's having the courage to actually go through with it.

There has been loads of posts and answers and pinned posts/ advice on de augmenting.

It very much depends on finding a knowledgeable doctor who will help with the necessary medications.

I wish you all the very best in your journey.

Heatherlss profile image
Heatherlss in reply toMadlegs1

Finding that doctor has been the hardest task.

I believe Doggymum may have a good point.

I accept that you may just want to share your experience and in which case you do have my sympathy, I can see that you have been struggling for the past year.

However, it may be that you are also hoping for some solution to the issues you're having.

I hope you're not offended but, I have made suggestions before that you took exception to. I can understand why this was, but it did mean you didn't consider what I wrote.

A year ago I picked up on your first post that you were taking a minimal amount of pramipexole and had been for six months only and you tried stopping it because you were "scared" of getting augmentation in the future. It appears then that you tried stopping the DA even though you didn't have augmentation and were at low risk of it because you were anxious about it.

You appear to have struggled ever since.

I'd suggest you stop "struggling" and explore means of relieving your anxieties. I don't wish to be dismissive, it is uncomfortable, but a fifteen minute RLS episode at a time when you're probably being active is inconvenient but bearable.

I appreciate that disturbed sleep is more of a problem, but I do wonder how much anxiety is also contributing to that.

It may be of benefit for you to pursue obtaining an iron infusion and depending on your ability to pay for it, this is a possibility.

In the meantime, I hope you're taking an iron supplement and avoiding aggravating factors.

I still think that anxiety is a significant issue for you.

Doggymum's advice rings true.

Heatherlss profile image
Heatherlss in reply to

I didn't write it clearly. It is not just the 10-15minute 11am RLS episode. It is also accompanied by episodes at 5am, 2:30 pm and 4:30pm and now 10:30pm even with Requip. I am sure you would now understand its my frustration and not anxiety. I've barely slept.

in reply toHeatherlss

Apologies, I only know what you wrote.

There is information about augmentation on this site.

I'm afraid I can't advise you any further.

I hope you find a solution.

in reply toHeatherlss

I didn't understand that either.

I'm still not going to say for sure you are augmenting (it's not my place to say), but this might help:

If, like you say, you are barely sleeping, then you should get with your doctor about this.

Heatherlss profile image
Heatherlss in reply to

I'm sorry I wasn't clear before.

I did get in touch with my doctor. I've been told to get an IV Infusion but have also been told to delay it for a while because of this pandemic and the chaos at the hospitals.

Meanwhile, she has also told me to either increase the Ropinerole to 0.5 mg for a while or take Tramadol 50/100mg as per what helps me.

Heatherlss profile image
Heatherlss in reply toHeatherlss

And also given Clonazpaem 0.25mg as a rescue medication

in reply toHeatherlss

That's fine. I know all about not being clear, so no sweat.🙂

I'm glad you got with your doctor about this. Not sleeping is Hell; I hope his/her regimen for you helps.

Here's to wishing you well!

Heatherlss profile image
Heatherlss in reply to

You're very sweet. Thank you so much. I needed some positivity after what has been a wreck of a week :) Hopefully, better nights are ahead.

in reply toHeatherlss

You're very welcome!😀

I hope so🙂

Eryl profile image
Eryl

Having a brief episode mid morning might indicate that it's something that you're eating for breakfast, probably something sugary like a cereal, fruit juice or toast and marmalade, or o combination of all three.

Heatherlss profile image
Heatherlss in reply toEryl

I do try watch my diet closely Eryl. Thanks though, I will try to be even more cautious.

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