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My response to the AASM Guidelines For RLS
I am posting this in the hope that it helps in forming your own response and if you agree with some of them, including them in your own response might help them pay more attention to them. ---------------------------------------------------------------------------------------------------------------
I am posting this in the hope that it helps in forming your own response and if you agree with some of them, including them in your own response might help them pay more attention to them. ---------------------------------------------------------------------------------------------------------------
SueJohnson
in
Restless Legs Syndrome
4 months ago
Valproate: new safety and educational materials to support regulatory measures in men and women under 55 years of age
I don't think there is any reason to expect many members to be taking any form of Valproate, but this is such an important issue, with such significant consequences, I've decided to post it anyway. Even if you are not taking it, someone you know might be. [i]
Valproate (Belvo, Convulex, Depakote,
I don't think there is any reason to expect many members to be taking any form of Valproate, but this is such an important issue, with such significant consequences, I've decided to post it anyway. Even if you are not taking it, someone you know might be. [i]
Valproate (Belvo, Convulex, Depakote,
helvella
Thyroid UK
in
Thyroid UK
6 months ago
Could Epilim and lacosamide/VIMPAT have something in common [type of medication?] that causes 'shakes',need to get some research done on it?
In 2016 I was taken off Epilim, I have JME epilepsy, I was on it for circa. eight years, with lamictal, but my hands shook so bad, fears it was Parkinson's disease, [my father had Parkinson's disease] I was 'tested' then subsequently again in 2021 both negative, I was put on Fycompa in 2016, the shaking
In 2016 I was taken off Epilim, I have JME epilepsy, I was on it for circa. eight years, with lamictal, but my hands shook so bad, fears it was Parkinson's disease, [my father had Parkinson's disease] I was 'tested' then subsequently again in 2021 both negative, I was put on Fycompa in 2016, the shaking
Adlon57
in
Epilepsy Action
8 months ago
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Shaky hands side effects of Vimpat [Lacosamide] or Briviact [Brivaracetam] have been taking them since April 2018?
Have very shaky hands can hardly type, various medical mishaps since then, in Jan 2018 had double seizure, broken skull, [later in July 2021 CT scan found this caused irreparable brain damage, Terminal] but typing almost impossible! In 2016 taken off Epilim, almost Parkinson's disease shaking hands,
Have very shaky hands can hardly type, various medical mishaps since then, in Jan 2018 had double seizure, broken skull, [later in July 2021 CT scan found this caused irreparable brain damage, Terminal] but typing almost impossible! In 2016 taken off Epilim, almost Parkinson's disease shaking hands,
Adlon57
in
Epilepsy Action
8 months ago
Incorrect medication
I have just gone to open what should have been a sealed box of 56 ethosuximide tablets to find out it was already open and there was only 47 tablets inside. Some had already been used from the packet which is of little use to me as I use 4 a day so need an even number. Has this happened to anyone else
I have just gone to open what should have been a sealed box of 56 ethosuximide tablets to find out it was already open and there was only 47 tablets inside. Some had already been used from the packet which is of little use to me as I use 4 a day so need an even number. Has this happened to anyone else
Angie140720
in
Epilepsy Action
10 months ago
interactions
My daughter is on Epilim Chronospheres 600mg twice a day. Are any of you on the same and have had strepsils before? If so which ones are safe for her alongside this medication. The Honey & Lemon ones say they contain alcohol so have avoided them. Thank you
My daughter is on Epilim Chronospheres 600mg twice a day. Are any of you on the same and have had strepsils before? If so which ones are safe for her alongside this medication. The Honey & Lemon ones say they contain alcohol so have avoided them. Thank you
SMV06
in
Epilepsy Action
1 year ago
Epilim and folate / change to lamotrigine ?
I was put on Epilim in my teens. Some years later, I became symptom free, and I was unmedicated for 10 years. I had to go back on Epilim Chrono five years ago - which may have been triggered by my thyroid problems. I’ve been on the thyroid forum, where it transpires that I am short on folate. A quick
I was put on Epilim in my teens. Some years later, I became symptom free, and I was unmedicated for 10 years. I had to go back on Epilim Chrono five years ago - which may have been triggered by my thyroid problems. I’ve been on the thyroid forum, where it transpires that I am short on folate. A quick
Applethorpe
in
Epilepsy Action
1 year ago
Advice required
I had I seizure in 2010 and my MRI was clear, and I’m pretty sure I didn’t have an EEG. I was put on Epilim chrono 1200 mg and have been seizure free since. I went privately so looks like they just signed me off and I never got any NHS follow ups. About a year ago I went back to my GP and asked due
I had I seizure in 2010 and my MRI was clear, and I’m pretty sure I didn’t have an EEG. I was put on Epilim chrono 1200 mg and have been seizure free since. I went privately so looks like they just signed me off and I never got any NHS follow ups. About a year ago I went back to my GP and asked due
Halloumilover
in
Epilepsy Action
1 year ago
Sodium valproate and thyroid and diabetes - severe learning disabilities/recommend endo?
Adult daughter with severe learning disabilities, non verbal,, autism etc. needs to see endo in London area for correct diagnosis as has put on weight . Suspected diabetes and/or thyroid problems. Awaiting blood test results. and has taken Epilim for 30 years combined with Vimpat for last 4 years
Adult daughter with severe learning disabilities, non verbal,, autism etc. needs to see endo in London area for correct diagnosis as has put on weight . Suspected diabetes and/or thyroid problems. Awaiting blood test results. and has taken Epilim for 30 years combined with Vimpat for last 4 years
Booba
in
Epilepsy Action
1 year ago
I was on Epilim and Lamictal for my Juvenile Myoclonic Epilepsy, bad shaking hands, was it Parkinson's disease, found reaction to Epilim!
My specialist had retired in 2013, but my GP thought it was Parkinson's disease as my father had dad it, negative test, but found it was a reaction built up over the years of Epilim, my new specialist in Dec. 2016 put me on Fycompa and Lamictal, within a couple of weeks I wanted to take up drawing classes
My specialist had retired in 2013, but my GP thought it was Parkinson's disease as my father had dad it, negative test, but found it was a reaction built up over the years of Epilim, my new specialist in Dec. 2016 put me on Fycompa and Lamictal, within a couple of weeks I wanted to take up drawing classes
Adlon57
in
Epilepsy Action
3 years ago
Long term side effects of Lamictal on bones and teeth?
I took Lamictal for my JME epilepsy, with Keppra, Epilim and Fycompa, my dentist was always ticking me off for years, I was paying for expensive fillings, crowns, etc, I wondered why, even going onto electric toothbrushes, still severe 'slap on the wrists' "Why don't use ...." blah, blah, then when
I took Lamictal for my JME epilepsy, with Keppra, Epilim and Fycompa, my dentist was always ticking me off for years, I was paying for expensive fillings, crowns, etc, I wondered why, even going onto electric toothbrushes, still severe 'slap on the wrists' "Why don't use ...." blah, blah, then when
Adlon57
in
Epilepsy Action
3 years ago
Essential tremors for Epilim and Lamictal [2013-2016] now same thing for Vimpat and Briviact [2018- 2021 ......
I have Juvenile Myoclonic Epilepsy and from 2013 was on Epilim and Lamictal but due to the severe tremors of my hands especially my left hand was scanned for Parkinson's disease, which proved negative [my father had had Parkinson's disease] my medication was changed to Fycompa and Lamictal which at first
I have Juvenile Myoclonic Epilepsy and from 2013 was on Epilim and Lamictal but due to the severe tremors of my hands especially my left hand was scanned for Parkinson's disease, which proved negative [my father had had Parkinson's disease] my medication was changed to Fycompa and Lamictal which at first
Adlon57
in
Epilepsy Action
3 years ago
I have J M E since the age of 14 I am 65, and have had over 400 + seizures, since 2013 I have seen "epilepsy specialists" four times!
In that time, on Epilim and lamictal, side effects of Epilim, meant I was tested for Parkinson's disease, severe shaking of hands, [negative] (my father had had Parkinson's){one. two} then new specialist {three} in December 2016, I smashed my chest, broke at least 5 ribs in February 2017, [tried suicide
In that time, on Epilim and lamictal, side effects of Epilim, meant I was tested for Parkinson's disease, severe shaking of hands, [negative] (my father had had Parkinson's){one. two} then new specialist {three} in December 2016, I smashed my chest, broke at least 5 ribs in February 2017, [tried suicide
Adlon57
in
Epilepsy Action
3 years ago
Night time awakenings
My wife has been diagnosed with epilepsy. She started with focal epilepsy that Levetiracetam sorted out. She moved through Lamotrigine to Epilim. She missed a few doses that resulted in three tonic clonic seizures. As a result, her neurologist prescribed an increased dose of Epilim. She is currently
My wife has been diagnosed with epilepsy. She started with focal epilepsy that Levetiracetam sorted out. She moved through Lamotrigine to Epilim. She missed a few doses that resulted in three tonic clonic seizures. As a result, her neurologist prescribed an increased dose of Epilim. She is currently
lebasor
in
Epilepsy Action
3 years ago
Advice on seizure types
I have just had a 24hour EEG and been told I have multiple seizures on it but am waiting the report. I suspect I might be having partial aware seizures, but dont know yet, where I am aware they have happened as they only last a few seconds. I am wondering if anyone else has experience of this and how
I have just had a 24hour EEG and been told I have multiple seizures on it but am waiting the report. I suspect I might be having partial aware seizures, but dont know yet, where I am aware they have happened as they only last a few seconds. I am wondering if anyone else has experience of this and how
Angie140720
in
Epilepsy Action
3 years ago
Switching from keppra to epilim, has anyone else had a seizure & if so did they go back on keppra or wait for it to settle?
I have been following the 4 month change over from keppra to epilim because I had a seizure Jan 2020. I took the last keppra on friday 29th Jan 21 and had a seizure on Sunday 31st Jan. Neuro have increased my epilim to 500mg twice a day but I am still getting absences which I havent had for years since
I have been following the 4 month change over from keppra to epilim because I had a seizure Jan 2020. I took the last keppra on friday 29th Jan 21 and had a seizure on Sunday 31st Jan. Neuro have increased my epilim to 500mg twice a day but I am still getting absences which I havent had for years since
Angie140720
in
Epilepsy Action
3 years ago
Levetiracetam information required
My son has been prescribed Levetiracetam in addition to Epilim Chrono because his seizures continue. I’m unsure about this - especially as it seems to make him very irritable. He has a tendency to depression and irritability anyway as he also has Type 1 diabetes and an acquired brain injury. I wondered
My son has been prescribed Levetiracetam in addition to Epilim Chrono because his seizures continue. I’m unsure about this - especially as it seems to make him very irritable. He has a tendency to depression and irritability anyway as he also has Type 1 diabetes and an acquired brain injury. I wondered
PinziA
in
Epilepsy Action
4 years ago
Effect of warfarin on epilepsy medication
A haemorrhage in the brain during open heart surgery repairing a aneurysm started my epilepsy 3 years ago. Control of my seizures is still elusive. I get absence seizures (5-7 a day) and full tonic-clonic (2-3 a week). I have to be on warfarin for the rest of my life because of mechanical aortic valve
A haemorrhage in the brain during open heart surgery repairing a aneurysm started my epilepsy 3 years ago. Control of my seizures is still elusive. I get absence seizures (5-7 a day) and full tonic-clonic (2-3 a week). I have to be on warfarin for the rest of my life because of mechanical aortic valve
VernHarvey
in
Epilepsy South Africa
5 years ago
Crippled By Hot Flashes
This has been going on for 3 years now - a year after my surgical menopause. I do believe this is a major cause of my anxiety - I hate them! I have tried HRT (several types) but it makes me feel worse with mood swings and a racing heart. When they happen, I get a horrible surge of anxiety, feel sick
This has been going on for 3 years now - a year after my surgical menopause. I do believe this is a major cause of my anxiety - I hate them! I have tried HRT (several types) but it makes me feel worse with mood swings and a racing heart. When they happen, I get a horrible surge of anxiety, feel sick
Meredyn
in
Anxiety Support
5 years ago
Temporal Lobe Seizures and loss of memory
So I have been having this type of vivid dejavu types of feelings which go for around 30 seconds to a minute and it’s this aurora like a brick is weighing on my chest, I can still communicate to people and talk whilst they are happening but it takes me a minute to feel right again. I can be having up
So I have been having this type of vivid dejavu types of feelings which go for around 30 seconds to a minute and it’s this aurora like a brick is weighing on my chest, I can still communicate to people and talk whilst they are happening but it takes me a minute to feel right again. I can be having up
kaileyris98
in
Epilepsy Action
5 years ago
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