Hello from newbie in Rugby

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Samtime
Posts: 2
Joined: Thu Sep 17, 2020 8:26 am

Hello from newbie in Rugby

Post by Samtime »

Hi everyone,

I have suffered from RLS for about 20 years . Have been taking Ropinirole for about 5 years 1 mg. If I take it more than an hour before I go to bed it makes me very sleepy but in recent months my symptoms get real bad in the evening and I can’t sit still. I have been taking a herbal sleeping tablet , Nytol, in the last few weeks and that has helped me get to sleep more quickly. Some nights nothing works and I toss about for hours. Often my legs are awful in the morning and I have to get up to relieve the symptoms. I would like some advice from all you experienced people as to whether I should stop the Ropinirole, go through the cold turkey and see what the base line RLS is after 5 years on medication. Thank you. Samtime



S

Polar Bear
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Re: Hello from newbie in Rugby

Post by Polar Bear »

First of all you are taking Nytol. This is actually diphenhydramine which is the same as Benadryl...... An absolute no no when it comes to RLS. It is a big aggravation for RLS and is on our list of things to be avoided.

Your ropinerole dose is 1mg and this is what out RLS experts would consider to be the daily maximum. Have you considered that you could be augmenting. Symptoms worse, appearing in your arms. Take a look on the Augmentation Forum and see if any of this is relevant to you. You will find there also posts of how some people have come off their ropinerole or pramipexole.

I was on ropinerole at a very high dose, 5mg daily and weaned off it very slowly. If you wish to stop your ropinerole I personally wouldn't stop cold turkey. Others have weaned off much more than quickly than I did and some cold turkey. Either way coming off is very difficult and you will need help from your dr. Symptoms will increase and sleep will be hard to find. Another medication will be needed, perhaps more than one, to support your withdrawal. An opioid works well. Also pregabalin or Gabapentin although these would not work on their own.

I found it a wonderful release to get off the ropinerole.

You don't mention your iron which is very important in particular your serum ferritin level. You want this to be over 100 even though normal can be as low as 20. Us RLS sufferers need to have serum ferritin higher than non sufferers.

First thing check your serum ferritin bloods with your GP.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Samtime
Posts: 2
Joined: Thu Sep 17, 2020 8:26 am

Re: Hello from newbie in Rugby

Post by Samtime »

Thanks very much for the advice.

ViewsAskew
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Location: Los Angeles

Re: Hello from newbie in Rugby

Post by ViewsAskew »

Hi Samtime - Betty had some great suggestions.

Betty mentioned augmentation - it is miserable! And, it happens to the vast majority of us who take dopaminergics such as ropinerole or pramipexole. Many doctors don't understand it and just have you increase the dose. That works initially, but eventually you have to take more again, and again, etc.

Lots of stuff has been written about it on the site. Or ask questions - or both :-).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: Hello from newbie in Rugby

Post by badnights »

Hi Samtime, you hanging in there?

Have you stopped the Nytol? you should notice a big difference when you do, because as Betty said, diphenhydramine is a certain trigger of extreme symptoms for all of us.

You may have difficulty noticing much improvement, however, if you have augmented on the ropinirole.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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