HealthUnlocked will undergo site maintenance on 8th April 2025 from 11:30AM (BST) / 6:30AM (EDT) for a few hours. We aim to restore the full service as soon as possible. Learn more
I wish I had discovered this forum earlier, it is nice to know at least there are others out there who know how horrible RLS is.
I have suffered really badly with RLS for more than 10 years. I mean extreme.
I am now up to 3mg Rotigitone patches, I had to get off the anti-psychotics, but wonder for how long they will help.
Hi and welcome !
and hi and welcome from me also!
First time on the forum....I have just changed to rotigotine patches 2mg, but still need 1mg of ropinorole. After a few weeks I have so many square red itchy marks and am generally more photosensitive, therefore staying indoors. Have stopped the parthes and am taking Clariitin anti histamine...all in all ..nights are hell even with some valium..do these patches work for anyone...at least I was more active when I began the patches at 1mg. Doing all the other things ie: walking, Epsom salt baths etc
wow you just mention 1 of the worse meds for making your rls go crazy, antihitamines
Ropinerole made me so nauseous even anti-nausea drugs weren't enough to get my head out of the toilet.
@sister3. Oh great, I've been taking loratadine to reduce scalp eczema for years. I'll stop them and see what happens.
helpguide.org/life/restless... SCROLL DOWN ON THIS LINK AND IT TELLS YOU WHAT MEDS WILL TRIGGER RLS OR MAKE IT WORSE
Thanks for the link sister3. It seems all my meds are conspiring to make the RLS worse. Glaucoma, blood pressure, hypothyroidism, excema, anemia, et al.
I stopped drinking and smoking, the coffee stays.
I had a really bad time last week and had an anxiety attack at the weekend. wifey called doc out who gave me diazepam and quinine. In emergency I'll resort to the diazepam and dihydrocodeine. I'll hold off on the quinine for now.
Great community. I will try to contribute when I can too.
quinine is for MAlaria , not any
good for RLS
Not a great fan of Ropinorole, but if I take the dose in 1/2 mgs from 7pm onwards I avoid the nausea.was on 4 mgs then after stopping smoking, down to 2 mgs, but made me v. lethargic and sleepy, so put on weight.
Some drugs need to be stopped slowly perhaps over several weeks. I'm not saying you should do so for loratadine because I don't know but it might be worh checking the patient information leaflet or with a pharmacist. And by the way, welcome to the forum.
Hi Twitchy-H and funnyfennel, welcome. Yes, it is good to know that we are not alone with all this as it sometimes certainly feels like it.
Kaarina 
Thanx for the welcome...am now on pramipexole .25mgs, but hardly 1 or two hours sleep, even after a good long walk.The rotigotine irritation from the patches is only just going and since then my dermatitis on my hands is awful...wearing gloves now..anyone else find the R. increased skin problems? Stopped the antihistimes as even Allegra did not seem to help....????
I've had the 2mg patches for over 3 years now having used ropinirole (with something else to stop me being sick) which only worked for a few months and other oral medication that made me worse. The only problem I have is when the patch comes off and I don't notice because it takes hours for the medication to get back in my system and I'm up all night again. I just wish there was something I could take for an occasional quick fix when needed because I lose so much of the next day with exhaustion when it happens.
I so agree about the quick fix. I wish I could get some really strong sleeping pills for use just once in a while. Of course the doctor would never prescribe such a thing because obviously in their eyes I'm mentally unstable. The doctors had that attitude when for 12 years I had terrible bowel problems, then they found something and removed my lower intestine. Now it's RLS.
Whatever the problem, if they don't know what it is they label you loony.
print of some rls info and go show it to your doctor i did, and it worked
My doctor will on occasion, like twice a year, give me a few sleeping pills, just so i can get some break from it all when i get really bad. I have to make them last as long as possible. usually, its fine and they work pretty well, but the last 2 times Ive used them ,they didnt put me to sleep and didnt calm my RLS as usual. Instead i had a very eventful night freaking out my partner, while having incredible hallucinations . i had hundreds of little people all over my body, digging, walking dogs , playing football, drilling, skipping with ropes, all sorts and they just would not get off. !!! fun!!!
It is awful when the medical profession do not believe you, and yet you feel so bad...I went to a special clinic in London and they were no help at all...in fact put me on the patches.
Managed to convince the doctor to give me some sleeping pills for emergency use after I convinced him that my having an anxiety attack because of 4 nights twitching, jumping and screaming is not a good idea.
Zopiclone. Has anyone taken these and do they work?
Yes ive taken them, they do help you to sleep, but i couldnt cope with the drowsy feeling the next day, but my brother also took them and he was fine with them, they just help you to relax and sleep really
Thank you tallula. I'd rather trust first hand experience of medication than the information on medical web pages.
I have the next day drowsy feeling most days anyway so if they get me to sleep without making me feel sick it's a win for me.
I hope you find they help x
I still haven't adjusted to pramipexole and so was given some zoplicone...took two and two P's. but no luck...last nite took x3 Prams still no luck....am strongly sleep deprived...may try the zoplicone again....let me know if you have any sucess....
Hi and welcome to the mad house Twitchy-H sorry wasn't around to welcome you when you first joined i had trouble getting on here ggrr,,, i've been on all the meds they use for RLS so far nothing works for me 
only made it worst finding a good dr and Neuro Dr helps mines trying his best bless him ... lots of stuff out there can make RLS worst it's finding the ones that do , here's a good site to find out whats what ... not sure if you already have it
A useful site, gypsy49. I shall spend some time going through the treatments list. It is the most comprehensive I have come across. Thanks.
Has anyone tried Gabapentin? Not sure I can get it in England, but seems less like a sledgehammer???
i have tried it didn't do anything for me other than give me spots on my face lol ..and made my heart race like a train... gggrrr im in the UK so yeah can get it here
oh some say it made them put weight on ..... Gabapentin that is
Really do not need extra "burden" of weight....do they give us Marijuana here??
I asked the Neuro Dr i see if he'd let me have Cannibis as it works for me his reply was not an answer in long run ...only short term answer going ask again when i go back end of the month when i go i emailed him my sleep diary couple so weeks ago, worth asking ,
Twitchy-H and funnyfennel., Queeneybee!
I didn't see this post until now, tonight. =)
Thanks for being open to talking things over with everyone.
That's just what we hope for everyday. New ideas are
a blessing.
To Admin just an idea
Nerves connected to intestines
What does GPT4 have to say about the role of inflammation in RLS?
Iron to alleviate RLS symptoms.
URGENT: IF YOU LIVE IN ENGLAND, PLEASE GIVE US JUST FIVE MINUTES? IT WILL HELP US TO IMPROVE THE QUALITY OF RLS SERVICES
