No sleep again.: I am due to see my GP... - Restless Legs Syn...

Restless Legs Syndrome

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No sleep again.

Shaft1952 profile image
12 Replies

I am due to see my GP on Monday re augmentation, but oh boy has my restless legs come back with a vengeance. Now starting at 2pm then settles after 2hrs then starts again. Then last night went to bed at 10-30pm then up from 3am tried to go back to bed at 5am when it appeared to have settled, but as soon as I settled down it started again. My current regime is Ropinirole 3.5mgs in the evening. Let's see what GP can suggest.

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Shaft1952 profile image
Shaft1952
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12 Replies
Madlegs1 profile image
Madlegs1

Sorry for your experience.

As you are aware - your dose of Ropinerole is way too high.

If it were me , I ould consider lowering the Rop to 3. and try to get some Codeine from chemist- without antihistamine , . That might get you through to Monday . You will then need to get off the Rop slowly and with an opiate for a few weeks untill you can get onto a new medication . (Gaba/ Prega-etc)

Good luck .

Shaft1952 profile image
Shaft1952 in reply to Madlegs1

Hi madlegs 1 thanks for your reply. I have tried gabapentin and side effects to bad. I do take iron gluconate in the morning and magnesium at night.

It was the locum GP who increased dose, he did suggest I went up to 4mgs but I wouldn't go up to that. My GP is not keen on the use of opiates, also I can't take tramadol. Watch this space.

Madlegs1 profile image
Madlegs1 in reply to Shaft1952

You realise that magnesium prevents the activity of Gaba. So your gaba dose is being negated by the mg.

Depends on what sort of mg you're taking . Citrate would negate more than oxide.

Well worth googling "magnesium and gabapentin".

Cheers.

Can you change doctor?😤

Grammieof4 profile image
Grammieof4 in reply to Madlegs1

You and I had this chat earlier today. It is magnesium oxide that I take with the abstention with no problem. Not sure that "negate" is the proper word; maybe "lessens the absorption?"

Joolsg profile image
Joolsg in reply to Shaft1952

Shows you how lacking in knowledge GP's and locums can be. 4mg way too high. If symptoms increasing, meds no longer working and you're getting RLS earlier, that should SCREAM augmentation to a Doctor and the only way to get rid of augmentation is to reduce the dose slowly over months while taking an opiate (if you can't take tramadol). Get your GP to read all the articles on here about augmentation. You will find it sooo difficult without an opiate. GP's fail to understand how traumatising it can be to get off ropinirole and they need to prescribe opiates. You will not get addicted/become dependent- it is just to see you through the withdrawal phase. When you are off ropinirole, you could try gabapentin/pregabalin- maybe you would not have as many side effects without Magnesium.

I came off ropinirole over 3 months & took last dose in mid August. Took a further 3-4 weeks to get over the withdrawal. Now on Gabapentin and I do have side effects but after 3 months they are reducing.

Hope your GP pays attention.

Good Luck

Jools

moonhunt18 profile image
moonhunt18 in reply to Joolsg

I took 1-2mg of ropinerole for 18 months. I quit cold turkey after the birth of my twins due to wanting to breastfeed. I was not reduced slowly off it nor was I given anything to help me. These options were never discussed. I was never informed of the possibility or necessity of doing this when coming off ropinerole.

What are symptoms of coming off my dosage in the way I did? I'm curious cuz there were very bad post partum things happening to me for a month or so after the birth/quitting ropinerole.

TIA

Joolsg profile image
Joolsg in reply to moonhunt18

My symptoms were severe RLS 24/7 for about 4 weeks .I had no sleep or rest at all for 3 days and had to keep moving constantly to try to lessen horrible RLS twitches and jerks. After a week I managed 2/3 hrs sleep and then next week 3/4 hrs sleep. I think my reaction was so severe because I'd been on it for 12 years.

If you had twin babies you will have suffered severe sleep deprivation anyway, especially with twins!

Jools

moonhunt18 profile image
moonhunt18 in reply to Joolsg

Oh wow! I'm so sorry you went through that! How awful.

Yes it's true. Sleep is a distant memory. Lol

SLMCP profile image
SLMCP

It's just horrible, isn't it..... only fellow sufferers can truly understand. I am on Pramipexole and codeineand getting good results so far. Good luck x

Izzybelle22 profile image
Izzybelle22

Hi Shaft1952. I too am on ropinirole, 2mg twice a day and seem to get very good relief from them at that dosage. Here is the USA, 4mg a day is the maximum allowed by law although some Drs. skirt around that and allow their patients to be prescribed more than that. (Lucky patients.) I have had RLS for over 20 years and have been on ropinirole for just as long. I usually get the RLS feelings when I am sitting down at the computer for a length of time and then again when I go to bed at night. Ropinirole lasts for 6 hours, where Mirapex and its generic,last for 8 hours. Good luck and please keep us apprised to your situation.

Shaft1952 profile image
Shaft1952 in reply to Izzybelle22

Thanks for your reply, the GP I see tomorrow is very good & listens to me, I also take all recent info from website to her, whether she reads it I don't know. So will put what happens on line.

moonhunt18 profile image
moonhunt18

I feel lame... what does it mean to experience augmentation with a med?

Does it refer to the need of increasing the dosage in order to achieve the same result?

If so is this common with requip/ropinerole? I started on 1mg in Jan 2015 and by the time I had to go off it due to breastfeeding my twins, I was taking 2mg. Not together though. Usually one in the eve and one either at bedtime or in the very early morning hours.

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