Pregabalin update: Hello and seasons... - Restless Legs Syn...

Restless Legs Syndrome
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Pregabalin update

Pam34
Pam34

Hello and seasons greetings

I’ve not posted on here for a while but thought I would end 2019 on a positive note. (For me anyway.)

Anybody reading my back story will know the horrors of my experience of augmentation with ropinirole, followed by a tolerance of Tramadol. I moved onto Pregabalin 150mg and am very pleased to report that after 16 months it is still effective (80% of the time.) I’ve also retired which has made a huge improvement to my sleep. Life is really good (apart from the aches and pains of getting older 😬).

I realise that I am very lucky, I know this drug is not for everyone and I know that it may not last forever. But for now I have my life back. Hopefully this positive message may help someone.

Enjoy the festive break, I’m off to London to spend some time with my 3 grandchildren (all under 5😱) so sleep may be scarce 😩.

Here’s to a kinder, gentler world in 2020.

Pam

11 Replies
oldestnewest

Dear Pam, thank you for your warm wishes and the update. It is so good to hear positive news now and then. Especially that your regimen of pregabalin lasts.

I have been on oxycodon slow release ( Oxycontin) for about the same amount of time, and I do quite well as well. Only the side effects of feeling tired all the time has put my life in a much slower pace permanently. Still adjusting to that. But I am sleeping rather well!

Warm and sleepy wishes for everyone 🎄🎁🙏

Wonderful news. Good luck and a happy festive season to you tooo.

So pleased to hear that Pam. Enjoy a magical Christmas with your grandchildren.

Thanks Pam. I am pleased for you and thanks for a note of cheer. Happy Christmas!

Do you take the medication all at once, or is it spread out over the day? I ask because I'm now on 50 mg of pregabalin 3x a day (after coming off of pramipexole a couple of months ago), and it's not working very well. Thank you.

Pam34
Pam34
in reply to Sumoucat

I take it all at once at about 8pm. No need during the day as my legs are fine (once I was over the withdrawal from the dopamine drugs and my legs settled back to pre dopamine days ie. evening/night only).

Pam

Great news Pam and Happy Christmas x

Pam34
Pam34
in reply to Pippins2

And you too. Hope things are still good 🤞🏻xx

I’m on pregabalin but am worried because the neurologist has said I will need to keep upping it ( I take it for nerve pain relief) as I have vision problems on it you say you have been on it 16 mths have you been able to stay on the same dosage thanks for any reply

Pam34
Pam34
in reply to Kingsley09

Hi

How long have you been on it and have you had to up it? I’m on it for RLS so can’t really comment on how it works for nerve pain relief or what the recommended dose is for this.

I’ve been on 150mg for 18mths and I know I could go up to 300mg. Obviously I’d rather not!

Any side effects I had are long gone. I do suffer from dry eye which can be a side effect but the doctor has prescribed me drops and it doesn’t really bother me.

Everybody is different and what suits one person may not suit another. There are a lot of horror stories out there and it is a case of determining which should be taken seriously and which should be dismissed. Your neurologist may have said you may or can increase it but not that you will have to.

Sorry I can’t be of more help.

Pam

Hi Pam I’ve been on it roughly 9 months and it’s the vision that is driving me mad I’ve balance problems because of the neuropathy and pregabalin has made it worse if I could stay at the dose I’m on I could cope but if I have to keep upping it I don’t know what I would do the consultant suggested that I lower it for a couple of days and then put it back up for a couple of weeks so at the moment that’s what I’m doing but it does make the days I’m lowering really hard to deal with anyway thanks for your reply

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