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Experiences with
Aicardi-goutieres syndrome (AGS)
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Methadone or Buprenorphine?
I have been on morphine successfully some years for severe RLS. However I'm beginning to think I need a change of meds. Opioid induced insomnia has gradually worsened so that I'm surviving on about 2 hours sleep now. I'm thinking of asking for either methadone or buprenorphine .I 've been thinking
I have been on morphine successfully some years for severe RLS. However I'm beginning to think I need a change of meds. Opioid induced insomnia has gradually worsened so that I'm surviving on about 2 hours sleep now. I'm thinking of asking for either methadone or buprenorphine .I 've been thinking
Jumpey
in
Restless Legs Syndrome
27 days ago
SEVERE NIGHT TIME LEG CRAMPS
I HAVE HAD RESTLESS LEGS SINCE I WAS 40 YEARS OLD & I AM NOW 88YEARS OLD. I HAD BEEN TAKING PRAMIPEXOLE 1.5 MG ALL THESE YEARS, BUT RECENTLY IT NO LONGER WAS HELPING ME. I WAS PUT ON ROPINIROLE 1MG BID WHICH DID NOT HELP & NOW I'M ON 2MG AM PM. I WAS HAVING SO MUCH BURNING IN BOTH MY LEGS & NUMBNESS
I HAVE HAD RESTLESS LEGS SINCE I WAS 40 YEARS OLD & I AM NOW 88YEARS OLD. I HAD BEEN TAKING PRAMIPEXOLE 1.5 MG ALL THESE YEARS, BUT RECENTLY IT NO LONGER WAS HELPING ME. I WAS PUT ON ROPINIROLE 1MG BID WHICH DID NOT HELP & NOW I'M ON 2MG AM PM. I WAS HAVING SO MUCH BURNING IN BOTH MY LEGS & NUMBNESS
Big4844
in
Restless Legs Syndrome
28 days ago
Dancing queen
Hi everyone l have had severe restless legs most of my life even before they gave it this name l have been on many opioids which no-one should be prescribed has this particular medication doesn't help as with time this medications dosage as to be increased to a point where you cannot take anymore and
Hi everyone l have had severe restless legs most of my life even before they gave it this name l have been on many opioids which no-one should be prescribed has this particular medication doesn't help as with time this medications dosage as to be increased to a point where you cannot take anymore and
D4nc1ngqu33m
in
Restless Legs Syndrome
29 days ago
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Methadone transition
I have been on 2mg er ropinerole for 10+ years - up and down on doses; mixed with a variety of other low dose meds; became 'refractory' a while ago - my RLS is advanced and has been so for 15+ years. I retired 2 years ago and decided it is time to finally be liberated from the evil 'R". ... I have
I have been on 2mg er ropinerole for 10+ years - up and down on doses; mixed with a variety of other low dose meds; became 'refractory' a while ago - my RLS is advanced and has been so for 15+ years. I retired 2 years ago and decided it is time to finally be liberated from the evil 'R". ... I have
Steino
in
Restless Legs Syndrome
1 month ago
I finally got my sublingual buprenorhine!
Hi everybody! Thanks to this forum I finally got a neurologist who was willing to prescribe me 0.2mg sublingual buprenorphine tablets. I've been on 100 tramadol for two weeks and was wondering which would be the wiser way of switching from one to the other and finding the right dose. I'm a bit worried
Hi everybody! Thanks to this forum I finally got a neurologist who was willing to prescribe me 0.2mg sublingual buprenorphine tablets. I've been on 100 tramadol for two weeks and was wondering which would be the wiser way of switching from one to the other and finding the right dose. I'm a bit worried
Anthas
in
Restless Legs Syndrome
1 month ago
Drug rash from Gabapentin/Dihydrocodeine? Anyone else?
In the past month I’ve noticed a drug rash from Gabapentin and/or Dihydrocodeine. It’s on my face and neck and chest. It’s not itchy but is hot and comes on after my last dose at bedtime. It’s not anaphylaxis (I’m a retired Paramedic) but just wondered if anyone else had experienced this? Thank you
In the past month I’ve noticed a drug rash from Gabapentin and/or Dihydrocodeine. It’s on my face and neck and chest. It’s not itchy but is hot and comes on after my last dose at bedtime. It’s not anaphylaxis (I’m a retired Paramedic) but just wondered if anyone else had experienced this? Thank you
Islay9
in
Restless Legs Syndrome
1 month ago
Ropinirole. Lovely Ropinirole.
Hello, I have had RLS of steadily increasing worsity for over fifty years. For the last twenty I have been taking increasing doses of Ropinirole, and for the last ten have been on 4mg a day with great success except of course for never sitting still for long, never travelling far in a car, NEVER going
Hello, I have had RLS of steadily increasing worsity for over fifty years. For the last twenty I have been taking increasing doses of Ropinirole, and for the last ten have been on 4mg a day with great success except of course for never sitting still for long, never travelling far in a car, NEVER going
Hidden
in
Restless Legs Syndrome
1 month ago
Rythmol/Propafenone
Has anyone been prescribed this antiarrhythmic? Due to the flecainide not working for me, my doctor wants me to go on this drug. I’m really hesitant to try another drug because of the Flecainide not working. Just wondering if anyone has ever tried this medication and if so, did it work?
Has anyone been prescribed this antiarrhythmic? Due to the flecainide not working for me, my doctor wants me to go on this drug. I’m really hesitant to try another drug because of the Flecainide not working. Just wondering if anyone has ever tried this medication and if so, did it work?
Debjimmay
in
Atrial Fibrillation Support
1 month ago
add injury to my misery
I have had RLS for around 40 years. I was on ropineral for about 20 years and was taken off by Dr. B around 3 years ago. I tried methadone ( didn’t like the drug hangover), oxycodone ( worked fairly well for about 8 months) and am now on Buprenorphine/Naloxone sublingual film 1/5 or 1/4 of a film in
I have had RLS for around 40 years. I was on ropineral for about 20 years and was taken off by Dr. B around 3 years ago. I tried methadone ( didn’t like the drug hangover), oxycodone ( worked fairly well for about 8 months) and am now on Buprenorphine/Naloxone sublingual film 1/5 or 1/4 of a film in
Crazygrl
in
Restless Legs Syndrome
2 months ago
pramipexole
I have been on Pramipexole for more years than I can remember. I was put on it at Walton Neurological Hospital by a Consultant. Last year another Neurologist tried me on Ropinirole which caused hallucinations. I am back on Pramipexole and during my years on it have suffered from overeating and excessive
I have been on Pramipexole for more years than I can remember. I was put on it at Walton Neurological Hospital by a Consultant. Last year another Neurologist tried me on Ropinirole which caused hallucinations. I am back on Pramipexole and during my years on it have suffered from overeating and excessive
Onion01
in
Restless Legs Syndrome
2 months ago
PLMD and RLS Update
25 + years ago, I began experiencing symptoms with leg jerkiness during sleep, causing me to rise and stretch and sit up until the movement stopped. The GP prescribed gabapentin, which led me down the road until 2016 with a move to Phoenix, and to visit a neurologist. After testing, and his patient for
25 + years ago, I began experiencing symptoms with leg jerkiness during sleep, causing me to rise and stretch and sit up until the movement stopped. The GP prescribed gabapentin, which led me down the road until 2016 with a move to Phoenix, and to visit a neurologist. After testing, and his patient for
vikkitennis
in
Restless Legs Syndrome
2 months ago
Thyroxine uptake and Ehlers Danlos Syndrome
Hi all, any experience or advice on this would be much appreciated. I have been on thyroxine for 25 years since having Hashimotos at the age of 29. I've also been diagnosed a while ago with Ehlers Danlos Syndrome and Fibromyalgia (both connective tissue disorders.) My new GP is messing about with
Hi all, any experience or advice on this would be much appreciated. I have been on thyroxine for 25 years since having Hashimotos at the age of 29. I've also been diagnosed a while ago with Ehlers Danlos Syndrome and Fibromyalgia (both connective tissue disorders.) My new GP is messing about with
hcmoss68
in
Thyroid UK
2 months ago
7 days off Pramipexole
Two months ago I finally found a doctor (addiction specialist) who read all the literature I gave him (from this site) and he was very understanding and prescribed me the suboxone film. I’m taking 1/7 of the film each day and it has enabled me to get to this point of no Pramipexole! I kinda thought
Two months ago I finally found a doctor (addiction specialist) who read all the literature I gave him (from this site) and he was very understanding and prescribed me the suboxone film. I’m taking 1/7 of the film each day and it has enabled me to get to this point of no Pramipexole! I kinda thought
Itsatom
in
Restless Legs Syndrome
2 months ago
For those considering methadone
hi again everyone, I just want to give a quick update for anyone who may be considering methadone. After trying many other drugs, and after augmentation and withdrawal from dopamine agonists, I started mid Feb on 2.5 mg methadone and have titrated slowly over 4 months to allow my body to get used to
hi again everyone, I just want to give a quick update for anyone who may be considering methadone. After trying many other drugs, and after augmentation and withdrawal from dopamine agonists, I started mid Feb on 2.5 mg methadone and have titrated slowly over 4 months to allow my body to get used to
Mongolia2020
in
Restless Legs Syndrome
2 months ago
HELP Please
How do I find a GP who knows about RLS. I have been back again to my GP as I'm now in server pain all the time which has sent my RLS into overdrive, I'm not sure if I'm in augmentation, she said she would give me an antidepressant to lift my mood!!. I explained that they will make my RLS worse and
How do I find a GP who knows about RLS. I have been back again to my GP as I'm now in server pain all the time which has sent my RLS into overdrive, I'm not sure if I'm in augmentation, she said she would give me an antidepressant to lift my mood!!. I explained that they will make my RLS worse and
Marymill
in
Restless Legs Syndrome
2 months ago
Exercise that often helps
Although I have experienced intensification of RLS symptoms after heavy, prolonged daytime exercise, paradoxically I have sometimes found significant relief with short bursts of fairly intense calisthenics when symptoms hit at night. As mentioned elsewhere, I have had RLS since my teens. By about age
Although I have experienced intensification of RLS symptoms after heavy, prolonged daytime exercise, paradoxically I have sometimes found significant relief with short bursts of fairly intense calisthenics when symptoms hit at night. As mentioned elsewhere, I have had RLS since my teens. By about age
Cedarish
in
Restless Legs Syndrome
2 months ago
At a loss
I was prescribed Ropinirole .25 mg I took that for 4 days and could not handle the side effects. Day 4 was terrible. After reading the posts, it seems as if I am screwed if I don't take any medication for it so I guess I will just have to live with this condition drug free. I was never a pill popper
I was prescribed Ropinirole .25 mg I took that for 4 days and could not handle the side effects. Day 4 was terrible. After reading the posts, it seems as if I am screwed if I don't take any medication for it so I guess I will just have to live with this condition drug free. I was never a pill popper
Tree1228
in
Restless Legs Syndrome
2 months ago
levodopa and augmentation
I have had RLS for over 10 years and controlling symptoms with oxycodone. I have also been diagnosed with Parkinson’s disease and prescribed Levodopa. Can someone please confirm whether or not this is a dopamine agonist like Pramipexole. If so does it also lead to augmentation?
I have had RLS for over 10 years and controlling symptoms with oxycodone. I have also been diagnosed with Parkinson’s disease and prescribed Levodopa. Can someone please confirm whether or not this is a dopamine agonist like Pramipexole. If so does it also lead to augmentation?
Covenant1962
in
Restless Legs Syndrome
2 months ago
Solving Restless Legs
Medscape have a report issued on June 14th on some new interesting research It is entitled; Solving Restless Legs: Largest Genetic Study to Date May Help and is written by Lisa Marshall and published in Medscape June 14, 2024 I think it is worth our while to know something about it so for
Medscape have a report issued on June 14th on some new interesting research It is entitled; Solving Restless Legs: Largest Genetic Study to Date May Help and is written by Lisa Marshall and published in Medscape June 14, 2024 I think it is worth our while to know something about it so for
thorp
in
Restless Legs Syndrome
2 months ago
cryo-ablation update
hi everyone, Thought I would give an update. I had the cryo-ablation on the 13th of May. i felt fairly uncomfortable over the first few weeks, but thanks to all the support and info on here, I have got through it without panic. the main thing is pacing myself and not overdoing it. Get enough
hi everyone, Thought I would give an update. I had the cryo-ablation on the 13th of May. i felt fairly uncomfortable over the first few weeks, but thanks to all the support and info on here, I have got through it without panic. the main thing is pacing myself and not overdoing it. Get enough
Tilly1957
in
Atrial Fibrillation Support
2 months ago
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