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Gorlin syndrome
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Apomorphine Pump
Has anyone had experience with the Apomorphine Pump? I was dianosed with Idiopathic Parkinson's Disease 18 years ago (2005) and have many add-on problems that have a great influence on my daily life. (Orthostatic hypotention, ruptured major iliopsoas tendon, burning mouth and tongue syndrome
Has anyone had experience with the Apomorphine Pump? I was dianosed with Idiopathic Parkinson's Disease 18 years ago (2005) and have many add-on problems that have a great influence on my daily life. (Orthostatic hypotention, ruptured major iliopsoas tendon, burning mouth and tongue syndrome
puckylucky
in
Cure Parkinson's
1 year ago
does an rls friendly diuretic exist?
I have bad swollen legs which my GP thinks is caused by excess fluid It probably comes from a combination of my RLS medicines ( Pregabalin 250 mg and 2mg Neupro patch) plus a recent knee replacement operation. To get rid of this excess fluid my GP upped my normal 50mg Spironolactone dose to 75 mg.
I have bad swollen legs which my GP thinks is caused by excess fluid It probably comes from a combination of my RLS medicines ( Pregabalin 250 mg and 2mg Neupro patch) plus a recent knee replacement operation. To get rid of this excess fluid my GP upped my normal 50mg Spironolactone dose to 75 mg.
thorp
in
Restless Legs Syndrome
10 months ago
More Methadone?
I have had RLS for decades with real relief pretty well only from the now - forbidden Pramipexole. I have been on Methadone 15 mg at bedtime for about 2 years now which has been pretty good, allowing me approximately 5 hours of sleep some nights. Recently it has worked less well. I’ve been up frequently
I have had RLS for decades with real relief pretty well only from the now - forbidden Pramipexole. I have been on Methadone 15 mg at bedtime for about 2 years now which has been pretty good, allowing me approximately 5 hours of sleep some nights. Recently it has worked less well. I’ve been up frequently
wairoa36
in
Restless Legs Syndrome
10 months ago
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Ubiquinol
Hello ladies, so I should hopefully be starting my first round of IVF next week staring with a AFC scan as soon as AF arrives. Do you think it would be worth upping my dosage of ubiquinol CoQ10 between now and egg collection? Not sure if it might be too late. I’m currently taking 100mg a day. Thanks
Hello ladies, so I should hopefully be starting my first round of IVF next week staring with a AFC scan as soon as AF arrives. Do you think it would be worth upping my dosage of ubiquinol CoQ10 between now and egg collection? Not sure if it might be too late. I’m currently taking 100mg a day. Thanks
mumma_in_the_making
in
Fertility Network UK
1 year ago
Seeking advice for London private fertility clinics
Hi everyone, I’m now 36, living in NW London. Previously diagnosed abroad with PCOS and prescribed oral clomiphene citrate with an unsatisfactory result. Only conducted basic tests and screening requested by GP for the sake of secondary care referral in NHS. While waiting for my first appointment at
Hi everyone, I’m now 36, living in NW London. Previously diagnosed abroad with PCOS and prescribed oral clomiphene citrate with an unsatisfactory result. Only conducted basic tests and screening requested by GP for the sake of secondary care referral in NHS. While waiting for my first appointment at
fupafupa
in
Fertility Network UK
1 year ago
3pd5t and cabergoline for prolactin
hello everyone! Hope u are all doing great. Today is day 3 of my frozen embryo transfer and because i have hyperprolactinemia i have being taken cabergoline weekly. So im supposed to take my weekly dosage (cabergoline 0.5) today but i was sceptical though my Dr said i can take it, i took it but im so
hello everyone! Hope u are all doing great. Today is day 3 of my frozen embryo transfer and because i have hyperprolactinemia i have being taken cabergoline weekly. So im supposed to take my weekly dosage (cabergoline 0.5) today but i was sceptical though my Dr said i can take it, i took it but im so
Babygirllllll
in
Fertility Network UK
1 year ago
Methadone withdrawal?
I am asking for a member on the fb page i am co-admin of. This lady is having a methadone drug holiday as instructed by her doctor. Her methadone isn’t working after being on it for several years. She is weaning off it but nothing she has tried to help with withdrawals is helping including medicinal
I am asking for a member on the fb page i am co-admin of. This lady is having a methadone drug holiday as instructed by her doctor. Her methadone isn’t working after being on it for several years. She is weaning off it but nothing she has tried to help with withdrawals is helping including medicinal
Hidden
in
Restless Legs Syndrome
11 months ago
Personal Sleep PR
This is the first time I have passed 8 hours of sleep in the almost 8 years of keeping track. I usually score 80 or 81. 89 is an all time record for me. So what happened. First off, I could feel my RLS earlier in the evening. Little things were beginning to trigger my RLS, nothing strong but
This is the first time I have passed 8 hours of sleep in the almost 8 years of keeping track. I usually score 80 or 81. 89 is an all time record for me. So what happened. First off, I could feel my RLS earlier in the evening. Little things were beginning to trigger my RLS, nothing strong but
WideBody
in
Restless Legs Syndrome
9 months ago
IBS Anxiety
HelloI'm new to this and I can't believe how many people are suffering with IBS or similar. It's astonishing! I'm 65 and have been managing it for 15 years when it started at the age of 50. I've managed it quite well with food, supplements, trial and error, and realized some time ago that symptoms
HelloI'm new to this and I can't believe how many people are suffering with IBS or similar. It's astonishing! I'm 65 and have been managing it for 15 years when it started at the age of 50. I've managed it quite well with food, supplements, trial and error, and realized some time ago that symptoms
Misspomfrey
in
IBS Network
1 year ago
A couple of runs
After almost five weeks away and one short run done, I went to the park run on Saturday. That particular course floods easily and I turned up unprepared to run through a LOT of flooded paths. It was totally horrid! Needless to say, I didn’t do well and it sapped me energy and confidence, but I did
After almost five weeks away and one short run done, I went to the park run on Saturday. That particular course floods easily and I turned up unprepared to run through a LOT of flooded paths. It was totally horrid! Needless to say, I didn’t do well and it sapped me energy and confidence, but I did
Oldlady64
in
Bridge to 10K
1 year ago
Coming off Pramipexole
I'm a 65 year old female in Norfolk in the UK, with hereditary RLS for which I was prescribed X1 every evening 0.088mg Pramipexole some 10 (possibly?) years ago. A year ago I had a single mastectomy, am on Anastrazole oestrogen suppressant hormone treatment and a Calcium/D3 supplement for that, along
I'm a 65 year old female in Norfolk in the UK, with hereditary RLS for which I was prescribed X1 every evening 0.088mg Pramipexole some 10 (possibly?) years ago. A year ago I had a single mastectomy, am on Anastrazole oestrogen suppressant hormone treatment and a Calcium/D3 supplement for that, along
GreyMaus
in
Restless Legs Syndrome
11 months ago
Dopamine Agonist withdrawal syndrome
On what would have been Robin Williams' 72nd birthday, a reminder of how dangerous dopamine agonists can be. If you mention DAWS to a UK doctor, they have no idea what we are talking about. They mistakenly say it only happens if the patient had Impulse Control Disorder. It can affect anyone taking these
On what would have been Robin Williams' 72nd birthday, a reminder of how dangerous dopamine agonists can be. If you mention DAWS to a UK doctor, they have no idea what we are talking about. They mistakenly say it only happens if the patient had Impulse Control Disorder. It can affect anyone taking these
Joolsg
in
Restless Legs Syndrome
11 months ago
RLS Ropinirole withrawl
My husband who is 79 yrs old is suffering from RLS and has all his life. The last 10 yrs have been almost unbearable. Ropinirole 8mg @ day is the only drug that gave him some relief but they have stopped making them and we have been weaning off of them for 2 mos now, are down to 2mg a day for 7 more
My husband who is 79 yrs old is suffering from RLS and has all his life. The last 10 yrs have been almost unbearable. Ropinirole 8mg @ day is the only drug that gave him some relief but they have stopped making them and we have been weaning off of them for 2 mos now, are down to 2mg a day for 7 more
Nahfranz
in
Restless Legs Syndrome
11 months ago
Tingling sensation in my fingers and hands. Is it caused by augmentation ?
Hello everyone my RLS is getting worse. I live in Mexico. I wanted everyone to know before I got started because there are certain drugs like buprenorphine I can’t get here. I’m finding that my arms and hands have this funny tingling in them when I go to bed. No jumping like my legs. It’s just a tingling
Hello everyone my RLS is getting worse. I live in Mexico. I wanted everyone to know before I got started because there are certain drugs like buprenorphine I can’t get here. I’m finding that my arms and hands have this funny tingling in them when I go to bed. No jumping like my legs. It’s just a tingling
Jrskyhook32
in
Restless Legs Syndrome
11 months ago
Tortuous
I'm now in my 4th week (feels like years!) of reducing Ropinirole and taking Pregabalin. GP prescribed 50mg which I quickly increased to 100 and I am now taking that with 0.5mg Ropinirole instead of 0.15mg. The moment I sit and 'settle' (no chance!)for the evening off go the legs. I'm already very low
I'm now in my 4th week (feels like years!) of reducing Ropinirole and taking Pregabalin. GP prescribed 50mg which I quickly increased to 100 and I am now taking that with 0.5mg Ropinirole instead of 0.15mg. The moment I sit and 'settle' (no chance!)for the evening off go the legs. I'm already very low
Firenze1
in
Restless Legs Syndrome
11 months ago
Back to the running after a long trip!
I’ve been away for four weeks, a long trip (for fun not work!) to Vietnam, Thailand and Cambodia. What an amazing experience and so many adventures but at heat of 30-36C there was no chance for running. So as I’ve been back almost two days I got out for a gentle run this morning. I did 25 minutes at
I’ve been away for four weeks, a long trip (for fun not work!) to Vietnam, Thailand and Cambodia. What an amazing experience and so many adventures but at heat of 30-36C there was no chance for running. So as I’ve been back almost two days I got out for a gentle run this morning. I did 25 minutes at
Oldlady64
in
Bridge to 10K
1 year ago
Advice on codeine v tramadol
I'm hoping for some advice because my doctor and the neurologists have been no help. For the past few years I have been taking 50mg tramadol, 300mg Gabapentin and 50mg sertraline. Prior to this I managed to wean off Pramipexole. I haven't increased the dosage of any of my current meds because I had hoped
I'm hoping for some advice because my doctor and the neurologists have been no help. For the past few years I have been taking 50mg tramadol, 300mg Gabapentin and 50mg sertraline. Prior to this I managed to wean off Pramipexole. I haven't increased the dosage of any of my current meds because I had hoped
Night_raven
in
Restless Legs Syndrome
11 months ago
Cannabis and Restless Leg
Hi all, I was told recently that cannabis, in whichever form you choose, may be helpful in relieving restless leg. Do any of you try this with any success? I had a weed cookie last night, very low dose, and it SEEMED to help, but I had only reduced my Mirapexin, not refrained completely, so I'm not
Hi all, I was told recently that cannabis, in whichever form you choose, may be helpful in relieving restless leg. Do any of you try this with any success? I had a weed cookie last night, very low dose, and it SEEMED to help, but I had only reduced my Mirapexin, not refrained completely, so I'm not
Farmgurl1
in
Restless Legs Syndrome
11 months ago
RLS-UK New Film - Ropinirole/Pramipexole/Neupro Patch
RLS-UK is commissioning a new film by a documentary company called SuperFolk Films. They have worked with other charities, including Parkinson's UK. The team would like to interview and film UK patients currently reducing Dopamine Agonists. Preferably, near the last stage of reduction. If you are
RLS-UK is commissioning a new film by a documentary company called SuperFolk Films. They have worked with other charities, including Parkinson's UK. The team would like to interview and film UK patients currently reducing Dopamine Agonists. Preferably, near the last stage of reduction. If you are
Kaarina
Administrator
in
Restless Legs Syndrome
11 months ago
Could my son have Ehlers-Danlos? Who to ask about diagnosis?
Hi everyone, I've joined the group today as I'm not sure if my son has hypermobile EDS and I'm not sure where to turn and what to do next. He has lots of niggly health issues which I'm starting to think might be EDS (or I could be adding 2+2=5). Since he was about 6 months old he has suffered horrendously
Hi everyone, I've joined the group today as I'm not sure if my son has hypermobile EDS and I'm not sure where to turn and what to do next. He has lots of niggly health issues which I'm starting to think might be EDS (or I could be adding 2+2=5). Since he was about 6 months old he has suffered horrendously
CN4321
in
Ehlers-Danlos Support UK
11 months ago
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