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Webinar: What causes photopsia and photophobia in patients with Stargardt and what impact does it have on their lives?
Flashing lights in vision (photopsia) or discomfort due to bright light or glare (photophobia) is often experienced by patients with Stargardt. However, little is understood about what causes these symptoms, their prevalence or the impact they can have on people’s lives. Omar Mahroo, consultant ophthalmologist
Flashing lights in vision (photopsia) or discomfort due to bright light or glare (photophobia) is often experienced by patients with Stargardt. However, little is understood about what causes these symptoms, their prevalence or the impact they can have on people’s lives. Omar Mahroo, consultant ophthalmologist
Carol_MacularSociety
Partner
in
Macular Society
6 months ago
Christopher
Hi there. Thank you for letting me join the group. 6 years ago I was diagnosed with stage 5 kidney disease and am on regular dialysis. I have since developed restless leg syndrome which has got steadily worse. Pramipexole was prescribed but honestly doesn't help much. As soon as I sit down to relax it
Hi there. Thank you for letting me join the group. 6 years ago I was diagnosed with stage 5 kidney disease and am on regular dialysis. I have since developed restless leg syndrome which has got steadily worse. Pramipexole was prescribed but honestly doesn't help much. As soon as I sit down to relax it
Migennes
in
Restless Legs Syndrome
4 months ago
Vitamin B2 Deficiency Can Cause B6 Toxicity! PWP Are Commonly Deficient In B2.
Vitamin B6 recycling. Image credit https://www.frontiersin.org/files/Articles/276491/fneur-08-00333-HTML/image_m/fneur-08-00333-g002.jpg From: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2017.00333/full Vitamin B6 is a coenzyme required for over 100 different biochemical transformations
Vitamin B6 recycling. Image credit https://www.frontiersin.org/files/Articles/276491/fneur-08-00333-HTML/image_m/fneur-08-00333-g002.jpg From: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2017.00333/full Vitamin B6 is a coenzyme required for over 100 different biochemical transformations
park_bear
in
Cure Parkinson's
6 months ago
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Macular Hole
Hi, long term PMR/GCA sufferer been on 4mg for long enough and staying there! However I developed a macular hole which needed surgery. Has anyone else had this problem, is there likely any association of cause with GCA /PMR or Pred? Surgery done now and I have to wait and see how successful it is.
Hi, long term PMR/GCA sufferer been on 4mg for long enough and staying there! However I developed a macular hole which needed surgery. Has anyone else had this problem, is there likely any association of cause with GCA /PMR or Pred? Surgery done now and I have to wait and see how successful it is.
doubtfully
in
PMRGCAuk
6 months ago
Side effects of Buprenorphine
Several persons on this site have already helped me but I want to ask the general following about the use of Buprenorphine for treatment of RLS. and its augmentation After testing in vain, pregabalin, oxycodone several other less well advertised RLS treatments I got agreement from my GP to try Buprenorphine
Several persons on this site have already helped me but I want to ask the general following about the use of Buprenorphine for treatment of RLS. and its augmentation After testing in vain, pregabalin, oxycodone several other less well advertised RLS treatments I got agreement from my GP to try Buprenorphine
davchar23
in
Restless Legs Syndrome
4 months ago
Opioids
Have been following posts, have studied Mayo Clinic, been back to rlshelp.org Have read Dr Earlys research , follow several Rls groups . I have done the DAs (unfortunately) The side effects of Gabapentin and Pregabalin far out way the benefits. Iron is good, I get infusions as needed. I use Magnesium
Have been following posts, have studied Mayo Clinic, been back to rlshelp.org Have read Dr Earlys research , follow several Rls groups . I have done the DAs (unfortunately) The side effects of Gabapentin and Pregabalin far out way the benefits. Iron is good, I get infusions as needed. I use Magnesium
RLSdaily
in
Restless Legs Syndrome
5 months ago
Transitioning to Gabapentin Enacarbil
I need some advice when it comes to starting Horizant while moving away from Pramipexole. I've been on Pram for about 12 years and although it still works generally, it's getting less an less effective. So it's time to move on. Gabapentin Enacarbil (Horizant) is what I'm moving to. My question
I need some advice when it comes to starting Horizant while moving away from Pramipexole. I've been on Pram for about 12 years and although it still works generally, it's getting less an less effective. So it's time to move on. Gabapentin Enacarbil (Horizant) is what I'm moving to. My question
grizzly99
in
Restless Legs Syndrome
5 months ago
Low platelets
Hello and thanks to contributors for the all the past useful information and support. Very much appreciated. My GP has now asked me to give Pramipexole a try as both Gabapentin and Pregabalin seem to have caused an unacceptable reduction in platelets. The negative correlation is fairly conclusive.
Hello and thanks to contributors for the all the past useful information and support. Very much appreciated. My GP has now asked me to give Pramipexole a try as both Gabapentin and Pregabalin seem to have caused an unacceptable reduction in platelets. The negative correlation is fairly conclusive.
Johan10
in
Restless Legs Syndrome
5 months ago
Methadone
Hello, 3 days ago I started methadone. Started with 2.5 mg on the first night. It didn’t help my rls completely, so the next night I took a whole pill, 5 mg. From an rls perspective, working great. I am not getting breakthrough rls, which is awesome! But I am not sleeping well. I have many short
Hello, 3 days ago I started methadone. Started with 2.5 mg on the first night. It didn’t help my rls completely, so the next night I took a whole pill, 5 mg. From an rls perspective, working great. I am not getting breakthrough rls, which is awesome! But I am not sleeping well. I have many short
Lespenney
in
Restless Legs Syndrome
5 months ago
Does anyone have any direct experience of Targinact?
Hi Everyone, this is my first post but I've been reading everything on this forum for a while now. I'm in real trouble with augmentation after taking ropinirole for 11 years. I successfully tapered off and was completely free of it by April 2023, however the RLS remained severe, and in October I decided
Hi Everyone, this is my first post but I've been reading everything on this forum for a while now. I'm in real trouble with augmentation after taking ropinirole for 11 years. I successfully tapered off and was completely free of it by April 2023, however the RLS remained severe, and in October I decided
Claire_lc
in
Restless Legs Syndrome
5 months ago
Sinemet Plus 25mg/100mg tablets Side effects?
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
Sarah106
in
Cure Parkinson's
7 months ago
Ropinerol withdrawal.... what now?
So after 15 years I'm off Requip. I'm now 4 days in with zero meds for RLS. A few contradictions of how long it takes to fully leave your system, however, I was hoping that my RLS would magically disappear along with my meds. Unfortunately, thats not been the case. Cannabis didn't help, it just left
So after 15 years I'm off Requip. I'm now 4 days in with zero meds for RLS. A few contradictions of how long it takes to fully leave your system, however, I was hoping that my RLS would magically disappear along with my meds. Unfortunately, thats not been the case. Cannabis didn't help, it just left
Boofoo71
in
Restless Legs Syndrome
5 months ago
Oxycodone - the way forward or a dead end?
I have only posted here briefly once but I have been following this great forum for some time. My story is very familiar. Have had RLS for 14 years, was prescribed all the available RLS medication: Ropinirole, Pramipexole (both miraculous at the beginning) Neupro patch ( never tolerated it), Gabapentin
I have only posted here briefly once but I have been following this great forum for some time. My story is very familiar. Have had RLS for 14 years, was prescribed all the available RLS medication: Ropinirole, Pramipexole (both miraculous at the beginning) Neupro patch ( never tolerated it), Gabapentin
etchea33
in
Restless Legs Syndrome
5 months ago
Ropinirole vs Buprenorphine!
I had a phone call from 1 Dr. who told me that Ropinirole would cure my RLS and was annoyed that I wouldn't take them. He decided to get the head of the Surgery to phone me to try to put pressure on me ! I did say that the 10 mcg had helped me a little bit but I would like a stronger patch . A few day's
I had a phone call from 1 Dr. who told me that Ropinirole would cure my RLS and was annoyed that I wouldn't take them. He decided to get the head of the Surgery to phone me to try to put pressure on me ! I did say that the 10 mcg had helped me a little bit but I would like a stronger patch . A few day's
Danni54
in
Restless Legs Syndrome
5 months ago
RESTLESS LEGS SYN
hello everyone I first experienced RLS 40 years ago most GPs had no idea and prescribed sedatives which were totally wrong for this condition I have managed it through other things ie walking on cold floor massage and been successful 5O % of the time until recently and the symptoms have worsened …a
hello everyone I first experienced RLS 40 years ago most GPs had no idea and prescribed sedatives which were totally wrong for this condition I have managed it through other things ie walking on cold floor massage and been successful 5O % of the time until recently and the symptoms have worsened …a
2024legs
in
Restless Legs Syndrome
5 months ago
Low dose Naltrexone or Suboxone. I'm seeing my doctor this week. Which one is best
After many years of RLS and coping quite well. First the dreaded mirapexin and then tramadol nothing is working at the moment. I was on 0.09 mg mirapexin. Now I'm on 50mg tram. Even if I take 100mgs it's not working so I'm obviously augmenting. Even Kratom isn't helping. I made an appointment with my
After many years of RLS and coping quite well. First the dreaded mirapexin and then tramadol nothing is working at the moment. I was on 0.09 mg mirapexin. Now I'm on 50mg tram. Even if I take 100mgs it's not working so I'm obviously augmenting. Even Kratom isn't helping. I made an appointment with my
Coeso
in
Restless Legs Syndrome
5 months ago
Sorbolene Lotion experience and my RLS
I was prescribed Sorbolene Lotion for my lower legs for dry skin - had very bad dry skin that was basically permanent. Anyway, I found that my restless legs disappeared after applying the cream. The cream is essentially just a moisturiser - says it has glycerine and vitamin E in it. I was applying it
I was prescribed Sorbolene Lotion for my lower legs for dry skin - had very bad dry skin that was basically permanent. Anyway, I found that my restless legs disappeared after applying the cream. The cream is essentially just a moisturiser - says it has glycerine and vitamin E in it. I was applying it
bernardnz
in
Restless Legs Syndrome
5 months ago
Restless leg syndrone
I am new on this forum and am suffering like hell with augmentation. I've had RLS slightly since I was 27 now 74. GP diagnosed cramp in those early days and told me to drink tonic water. Things got worse and saw a neurologist (at my expense) some 12 years ago and put me on Rotigotine patch 1mg. Things
I am new on this forum and am suffering like hell with augmentation. I've had RLS slightly since I was 27 now 74. GP diagnosed cramp in those early days and told me to drink tonic water. Things got worse and saw a neurologist (at my expense) some 12 years ago and put me on Rotigotine patch 1mg. Things
Marmot2
in
Restless Legs Syndrome
5 months ago
sjogens?
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
Yanico
in
MPN Voice
7 months ago
taking collagen
I am on a maintenance drug after been diagnosed with hg ovianian cancer Is anyone taking a collagen supplement
I am on a maintenance drug after been diagnosed with hg ovianian cancer Is anyone taking a collagen supplement
Curry55
in
My Ovacome
4 months ago
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