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Professor Graham Hughes' Monthly Blog May 2016
Monthly Blog May 2016 I receive daily emails regarding Hughes syndrome. This week, one example from Kazakhstan: “Dear Dr Hughes…since the number of patients with Hughes syndrome in Kazakhstan is big, some of them are just weird.” The word is spreading. In the UK a new initiative to help spread information
Monthly Blog May 2016 I receive daily emails regarding Hughes syndrome. This week, one example from Kazakhstan: “Dear Dr Hughes…since the number of patients with Hughes syndrome in Kazakhstan is big, some of them are just weird.” The word is spreading. In the UK a new initiative to help spread information
MaryF
Administrator
in
Hughes Syndrome APS Forum
8 years ago
Some Answers
Here's a short article from Johns Hopkins followed by a long conversation discussing it. http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html MR X - I tried some N-acetyl cysteine at one time to try to lower my glutamate. No change to
Here's a short article from Johns Hopkins followed by a long conversation discussing it. http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html MR X - I tried some N-acetyl cysteine at one time to try to lower my glutamate. No change to
Hidden
in
Restless Legs Syndrome
8 years ago
SERTRALINE AND RSL
I AM ON 200MG DAILY OF SERTRALINE AND MY RSL HAS INCREASED. TRIED LAVENDER OIL RUBBED INTO LEGS AND FEET - QUININE TABLETS AND AMITRYPTILINE. THE 2 LATER WORKED FOR A WEE WHILE NOW UNFORTUNATELY THE RSL IS BACK WORSE OF ALL I HAVE STARTED TO TAKE CRAMPS IN BOTH ANKLES AND KNEES. CAN ANYONE GIVE ME ADVICE
I AM ON 200MG DAILY OF SERTRALINE AND MY RSL HAS INCREASED. TRIED LAVENDER OIL RUBBED INTO LEGS AND FEET - QUININE TABLETS AND AMITRYPTILINE. THE 2 LATER WORKED FOR A WEE WHILE NOW UNFORTUNATELY THE RSL IS BACK WORSE OF ALL I HAVE STARTED TO TAKE CRAMPS IN BOTH ANKLES AND KNEES. CAN ANYONE GIVE ME ADVICE
AMW68
in
Restless Legs Syndrome
8 years ago
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rls recently joined
i have had rls for a good few years but never really tired any drugs specially just now cos i have had a mastectomy mastectomy. awaiting radiotherapy. one of the staff in hospital suggested i try drinking tonic water s it contains quinine and is supposed to help , and one else tries this? please
i have had rls for a good few years but never really tired any drugs specially just now cos i have had a mastectomy mastectomy. awaiting radiotherapy. one of the staff in hospital suggested i try drinking tonic water s it contains quinine and is supposed to help , and one else tries this? please
marjorie2
in
Restless Legs Syndrome
8 years ago
Vagal AF
50 years Patients without heart disease (lone AF) Preferentially nocturnal, during rest, after eating or drinking Preceded by bradycardia Lower ventricular response rate during AF Aggravation by beta blocker and/or digoxin Digoxin, verapamil, sotalol, and flecainide are poor choices Disopyramide and
quinidine
50 years Patients without heart disease (lone AF) Preferentially nocturnal, during rest, after eating or drinking Preceded by bradycardia Lower ventricular response rate during AF Aggravation by beta blocker and/or digoxin Digoxin, verapamil, sotalol, and flecainide are poor choices Disopyramide and
quinidine
EngMac
in
AF Association
8 years ago
Sudden 10000% increase in severity
I've suffered RLS since my mid-teens, as I'm 45 now that's 30 years of it. With the exception of the summer of 95 when a useless psychiatrist who knew nothing shoved me on Sulpiride it's always been just about managable in severity. The day I told the idiot psychiatrist to stick his Sulpiride and I stopped
I've suffered RLS since my mid-teens, as I'm 45 now that's 30 years of it. With the exception of the summer of 95 when a useless psychiatrist who knew nothing shoved me on Sulpiride it's always been just about managable in severity. The day I told the idiot psychiatrist to stick his Sulpiride and I stopped
SickSickSickofRLS
in
Restless Legs Syndrome
8 years ago
What to do?
This is my first post. I've had rls and plmd for 35 years. They arrive in two forms. Painful and weird muscle contractions, spasms, donkey bites and jumps, all involuntary. Nerve shocks similar to electric shocks shooting along neural pathways in my legs, and sometimes occurring as needle-like pain penetrating
This is my first post. I've had rls and plmd for 35 years. They arrive in two forms. Painful and weird muscle contractions, spasms, donkey bites and jumps, all involuntary. Nerve shocks similar to electric shocks shooting along neural pathways in my legs, and sometimes occurring as needle-like pain penetrating
rkatt
in
Restless Legs Syndrome
8 years ago
Exhaustion
Hi everyone. I have had cirrhosis since March 2014 and have a UKELD of 53 with possible referral for transplant depending on results this week. My problem is simply exhaustion!. Sitting here crying and getting mad with myself for not having any energy. I am still working full time from home but am physically
Hi everyone. I have had cirrhosis since March 2014 and have a UKELD of 53 with possible referral for transplant depending on results this week. My problem is simply exhaustion!. Sitting here crying and getting mad with myself for not having any energy. I am still working full time from home but am physically
SweetJaney
in
British Liver Trust
8 years ago
What do you do to relieve your pain or take your mind off it ?
Thought it would be a good idea for anyone or everyone to share their method of pain relief and maybe some members would have good ideas to share, especially with new members. Is there anything that you helps, ease your pain in some way. Do you use pain killers, Do you use a tens Machine, Do you use
Thought it would be a good idea for anyone or everyone to share their method of pain relief and maybe some members would have good ideas to share, especially with new members. Is there anything that you helps, ease your pain in some way. Do you use pain killers, Do you use a tens Machine, Do you use
Janet28
in
Fibromyalgia Action UK
8 years ago
Hi Katherine
Just reading your post after looking up searing pain in little finger and wrist and thinking im gona have to take more pain meds. Yes you are right it does effect everyone differently but the one factor that is the same for everyone is Pain and I find it shocking that you are not given meds to allieviate
Just reading your post after looking up searing pain in little finger and wrist and thinking im gona have to take more pain meds. Yes you are right it does effect everyone differently but the one factor that is the same for everyone is Pain and I find it shocking that you are not given meds to allieviate
Janet28
in
Fibromyalgia Action UK
9 years ago
How do you cope with pain?
Over the last year I have been experiencing increasing pqin in legs and feet aside from usual neuropathic pain. This is cramping of leg muscles and feet if I take a few steps, only partially relieved with rest. Tried quinine and gabapentin to no avail and only pred seems to relieve it. Also started
Over the last year I have been experiencing increasing pqin in legs and feet aside from usual neuropathic pain. This is cramping of leg muscles and feet if I take a few steps, only partially relieved with rest. Tried quinine and gabapentin to no avail and only pred seems to relieve it. Also started
jpet72
in
Behçet's UK
9 years ago
Compulsive Behaviour or Two Loves?
I was diagnosed 5 years ago. I was initially put on a low dosage of Sinemet 25/100 with 6 monthly visits to my Nuero Dr. As my condition worsened very quickly (or so it seemed to me) After trying the patches (Had a skin reaction) I was soon on the maximum dosage of Ropinerole (Requip XL) 3x 8mg per day
I was diagnosed 5 years ago. I was initially put on a low dosage of Sinemet 25/100 with 6 monthly visits to my Nuero Dr. As my condition worsened very quickly (or so it seemed to me) After trying the patches (Had a skin reaction) I was soon on the maximum dosage of Ropinerole (Requip XL) 3x 8mg per day
Bobbyboy1947
in
Cure Parkinson's
9 years ago
Hi..RLS..another night.
Hi..I was pointed to this site from another forum that deals with RLS and am just saying a "hi" and trying to see if I can find some info and thus relief from my RLS..I suffered for a couple of years before learning I had RLS as I didn`t tell anybody as I couldn`t describe the feelings..it was only when
Hi..I was pointed to this site from another forum that deals with RLS and am just saying a "hi" and trying to see if I can find some info and thus relief from my RLS..I suffered for a couple of years before learning I had RLS as I didn`t tell anybody as I couldn`t describe the feelings..it was only when
miaperson
in
Restless Legs Syndrome
9 years ago
Pre-Op Assessment
Well, I had my pre-op assessment for the spinal operation I'll be having a fortnight on Monday to treat the sciatica I've been suffering from since February. I mentioned about suffering from RLS and how I couldn't just stop taking Tramadol because of the effects that would have on my RLS, and the Senior
Well, I had my pre-op assessment for the spinal operation I'll be having a fortnight on Monday to treat the sciatica I've been suffering from since February. I mentioned about suffering from RLS and how I couldn't just stop taking Tramadol because of the effects that would have on my RLS, and the Senior
MumofSam
in
Restless Legs Syndrome
9 years ago
Did I tell you about my broken sleep ?? Cramp ,, just got to the bit where I was getting that big silver trophy at best in show ..woke up ..
Took myself off to the doctors ,,the nurse was so lovely .gave me some pills for quinine ,now my night sleep is unbroken ..and my dreams are uninterrupted ..I'm a happy twinkly again !!! Xx
Took myself off to the doctors ,,the nurse was so lovely .gave me some pills for quinine ,now my night sleep is unbroken ..and my dreams are uninterrupted ..I'm a happy twinkly again !!! Xx
Twinkly
in
MPN Voice
9 years ago
Sleep
Since my first episode of HE a few weeks ago, I was prescribed Lactulose and Rifaximin (as you would expect). Unfortunately I was still getting cramps and spent the nights jerking and awake, so my doctor prescribed 200mg of quinine for the cramps. Surprisingly I have slept well every night since. Quinine
Since my first episode of HE a few weeks ago, I was prescribed Lactulose and Rifaximin (as you would expect). Unfortunately I was still getting cramps and spent the nights jerking and awake, so my doctor prescribed 200mg of quinine for the cramps. Surprisingly I have slept well every night since. Quinine
Hidden
in
British Liver Trust
9 years ago
Looking for support
Hello community. This is my first post, and while I have not been officially diagnosed, I am looking for some support. I swear I feel crazy as my family and friends do not understand how this affects me. I remember having an RLS attack while watching Harry Potter and the Order of the Phoenix in the
Hello community. This is my first post, and while I have not been officially diagnosed, I am looking for some support. I swear I feel crazy as my family and friends do not understand how this affects me. I remember having an RLS attack while watching Harry Potter and the Order of the Phoenix in the
Sphynxowner
in
Restless Legs Syndrome
9 years ago
Quinine
Has anyone heard of using Quinine Hydrochloride as a treatment for vasculitis?
Has anyone heard of using Quinine Hydrochloride as a treatment for vasculitis?
BillP101
in
PMRGCAuk
9 years ago
Like the walking dead today!
Blimey all I missed the rollercoaster that flattened me over the last few days! I seem to have started getting restless legs at night. Used to get twitchy sometimes if I was hungry.low blood sugar. but this is something else! 5 am when I last looked at the clock this morning, and boy pain is overwhelming
Blimey all I missed the rollercoaster that flattened me over the last few days! I seem to have started getting restless legs at night. Used to get twitchy sometimes if I was hungry.low blood sugar. but this is something else! 5 am when I last looked at the clock this morning, and boy pain is overwhelming
joannie1964
in
Fibromyalgia Action UK
9 years ago
Painful feet
Hello fellow fibromites. Recently my feet have started to really hurt me. Even though I am taking quinine nightly I still get cramp in my feet. My feet also feel like they are burning when I am in bed. However, the worst is my heels. The edge of my heels feel like am standing on nails. The pain is almost
Hello fellow fibromites. Recently my feet have started to really hurt me. Even though I am taking quinine nightly I still get cramp in my feet. My feet also feel like they are burning when I am in bed. However, the worst is my heels. The edge of my heels feel like am standing on nails. The pain is almost
Sandy247
in
Fibromyalgia Action UK
9 years ago
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