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Epilepsy Action

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4 seizures 4 years always spring help

help me, any idea about triggers ?!

Bees78

•11 hours ago

1 Reply

This is definitely a MUST SEE video for anyone who is receiving medical treatment for epilepsy!!

I posted this on Health Unlocked earlier this year, but would like to give it it more attention here on the Epilepsy Action website. Two years ago my...

I posted this on Health Unlocked earlier this year, but would like to give it it...

Mybraveface

•17 hours ago

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Difficulty getting cenobamate?

Hi, I’m just wondering if anyone else is experiencing shortages or difficulties getting repeats of cenobamate? It’s been with the pharmacy for nearly 2 weeks...

Hi, I’m just wondering if anyone else is experiencing shortages or difficulties...

Climbingthewalls

•4 days ago

6 Replies

Want to take advantage of all our features? Just log in!

Link? Schwannomatosis [Neurofibromatosis Type 3] to Epilepsy - Juvenile Myoclonic Epilepsy ;I believe a link BUT due to rarity of condition?

I am aged 68, in 1970 when I was swimming in my school swimming pool, I 'knocked' myself out hitting the edge of the pool. From then on I had what is termed...

I am aged 68, in 1970 when I was swimming in my school swimming pool, I 'knocked...

Adlon57

•5 days ago

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Epilepsy Apps

Looking to get my daughter a smart watch and then sign up to an Epilepsy App. Any thoughts on those available? My Medic Watch SeizAlarm Smartwatch...

Looking to get my daughter a smart watch and then sign up to an Epilepsy App. A...

Goose10

•7 days ago

1 Reply

If you take anticonvulsants and steroids, be cautious and aware......

I have a few chronic issues...like many of us. This is cautionary about the effects of steroids on seizure meds. I've been on seizure meds since 1955, my...

I have a few chronic issues...like many of us. This is cautionary about the eff...

Grammy80

•8 days ago

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Advice please

I'm having a bit of a crisis. I've been diagnosed with epilepsy for 6 years now and have tried 6 different medications since diagnosis. The last one seemed to...

I'm having a bit of a crisis. I've been diagnosed with epilepsy for 6 years now ...

Shorehampete

•12 days ago

6 Replies

menopause

Hi, has anyone been experiencing a change in seizures since menopausal? I’m experiencing a worsening of seizures alongside all the menopause side affects such...

Hi, has anyone been experiencing a change in seizures since menopausal? I’m exp...

Baconandavocado

•13 days ago

3 Replies

Son lost his job 😞

Hi. After my son had his first awake seizure last November he’s been off work as he drives for a living. After many meetings he has now been medically...

Hi. After my son had his first awake seizure last November he’s been off work a...

Toddyboy12

•18 days ago

11 Replies

Hyperbaric Oxygen Therapy

Hi , as someone who started to experience tonic clonic seizures around 5 years ago I was prescribed Levetiracetam ( Keppra) which largely controls my seizures....

Hi , as someone who started to experience tonic clonic seizures around 5 years a...

9thwave

•19 days ago

2 Replies

New...(ish) diagnoses and family history of epilepsy.

Hi, first post on here so, I thought I'd share my experience :) I had my first tonic-clonic seizure in December 2023 after having symptoms around Oct/Nov the...

Hi, first post on here so, I thought I'd share my experience :) I had my first ...

sk0325

•1 month ago

9 Replies

https://healthunlocked.com/epilepsyaction/posts/151593397/

I asked my GP to stop treatment with carbamazepine due to increasing side-effects having taken it for over 25 years. I asked to be switched on to a more...

I asked my GP to stop treatment with carbamazepine due to increasing side-effec...

Mybraveface

•1 month ago

2 Replies

Epilepsy and menopause

Does anyone have any experience of their epilepsy changing at the, possible/probable, on set on menopause?

Does anyone have any experience of their epilepsy changing at the, possible/prob...

the_swimmer

•1 month ago

3 Replies

Neurology Appt.approaching

As 1000mgs of Levateracetam does not completely stop the seizures. What would be the next stage of treatment. Very nervous about any drug increase as I don't...

As 1000mgs of Levateracetam does not completely stop the seizures. What would be...

wheatenbread

•1 month ago

11 Replies

Memory loss from Carbamazepine

I wanted to share a recent change in my medication for Trigeminal Neuralgia caused by Acoustic Neuroma. This is treated with Carbamazepine also being used in...

I wanted to share a recent change in my medication for Trigeminal Neuralgia caus...

GGourmet

•1 month ago

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Epilepsy medication and Prochloperazine

I've been prescribed prochloperazine for dizziness and bppv. The GP googled interactions with the seizure medications but couldn't find anything to say these...

I've been prescribed prochloperazine for dizziness and bppv. The GP googled inte...

Dawn43

•2 months ago

3 Replies

CBD any experiences

Hi just read an article in telegraph about medical cannabis use and parents who are growing their own and have had good results. Just wondering what has been...

Hi just read an article in telegraph about medical cannabis use and parents who ...

rankin1st

•2 months ago

3 Replies

hello

Brighton (East Sussex)

sab1980

•2 months ago

2 Replies

Any tips

Our son is 41 lives alone and is frightened of cooking and having a seizure and the risk of fire On Monday he had a seizure whilst out and was taken to...

Our son is 41 lives alone and is frightened of cooking and having a seizure and ...

Cat33

•3 months ago

15 Replies

Embrace Watch

I have had Epilepsy for 10 years now! I am about to buy an Embrace watch and I was wondering what people do when the watch is on the charger! Do you buy...

I have had Epilepsy for 10 years now! I am about to buy an Embrace watch and I w...

Leah-02

•3 months ago

1 Reply

3 Year old grandaughter, so worried about her.

Dear All, my 3 year old grandaughter has been diagnosed with epilepsy since she was 6 months old. They previously thought it was febrile convulsions. She...

Dear All, my 3 year old grandaughter has been diagnosed with epilepsy since sh...

saffron007

•3 months ago

3 Replies

I consider this to be a "MUST SEE" video for anyone who is receiving medical treatment for epilepsy!

https://youtu.be/rWSkwNfG2bc?si=SnR9x2MM_SH48IK7 I am currently having issues with switching medications and during my research...

https://youtu.be/rWSkwNfG2bc?si=SnR9x2MM_SH48IK7 I...

Mybraveface

•3 months ago

5 Replies

epilepsy and work

hi. My son started having sleep seizures around 10 years ago when he was 14. He could go 6-12 months between seizures. The last couple years the time between...

hi. My son started having sleep seizures around 10 years ago when he was 14. He...

Toddyboy12

•3 months ago

11 Replies

Fycompa

I have recently Come off this med and Vimpat. I have temporal lobe scelorosis. I am currently on cenobamate 250mg and nyzol 200mg and noiafren.Side effects...

I have recently Come off this med and Vimpat. I have temporal lobe scelorosis. I...

Tenerife1234

•3 months ago

2 Replies

Temporal Lobe Epilepsy

I’m interested in finding others coping with Temporal Lobe Epilepsy…I received my diagnosis in the late 1990s and until fairly recently managed DeJa Vu...

I’m interested in finding others coping with Temporal Lobe Epilepsy…I received m...

wobblybee

•3 months ago

22 Replies

Newly diagnosed w/ JME

Hi everyone, First post on here and a (relatively) recent diagnosis. It's been just over a year since I've been diagnosed with epilepsy at the age of 21 -...

Hi everyone, First post on here and a (relatively) recent diagnosis. It's been ...

AName123

•3 months ago

6 Replies

Must be my time of life, dreams of past times, usually bad ones coming back? I've had J.M.Epilepsy since 14 now aged 68, "nightmares"?

I'm in reality terminally ill, no specific time, brain damage/broken skull and untreatable rib cage structure caused by effects of epileptic seizures but now...

I'm in reality terminally ill, no specific time, brain damage/broken skull and ...

Adlon57

•3 months ago

3 Replies

Support for you

It's great that members here share their thoughts and experiences. But if you're looking for more support, please call our freephone helpline on 0808 800...

It's great that members here share their thoughts and experiences. But if you're...

EpilepsyAction-DT

Epilepsy Action•3 months ago

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T.E.A = Transitory Epileptic Amnesia

The best definition I have found re. TEA is on Wikipedia. I’m involved in a number of organisations and organise events and participate in performances before...

The best definition I have found re. TEA is on Wikipedia. I’m involved in a numb...

Considine

•4 months ago

1 Reply

Effects of Fycompa for Juvenile Myoclonic Epilepsy? Had epilepsy for over fifty years, thus been through most of the 'selection' ,WORST!

I was on Fycompa [with lamictal] from December 2016 to November 2017, my neurology notes on myself had been lost, a new neurologist using notes I had sent...

I was on Fycompa [with lamictal] from December 2016 to November 2017, my neurol...

Adlon57

•4 months ago

4 Replies

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Posts - Epilepsy Action | HealthUnlocked

Epilepsy Action

4 seizures 4 years always spring help

This is definitely a MUST SEE video for anyone who is receiving medical treatment for epilepsy!!

Difficulty getting cenobamate?

Link? Schwannomatosis [Neurofibromatosis Type 3] to Epilepsy - Juvenile Myoclonic Epilepsy ;I believe a link BUT due to rarity of condition?

Epilepsy Apps

If you take anticonvulsants and steroids, be cautious and aware......

Advice please

menopause

Son lost his job 😞

Hyperbaric Oxygen Therapy

New...(ish) diagnoses and family history of epilepsy.

https://healthunlocked.com/epilepsyaction/posts/151593397/

Epilepsy and menopause

Neurology Appt.approaching

Memory loss from Carbamazepine

Epilepsy medication and Prochloperazine

CBD any experiences

hello

Any tips

Embrace Watch

3 Year old grandaughter, so worried about her.

I consider this to be a "MUST SEE" video for anyone who is receiving medical treatment for epilepsy!

epilepsy and work

Fycompa

Temporal Lobe Epilepsy

Newly diagnosed w/ JME

Must be my time of life, dreams of past times, usually bad ones coming back? I've had J.M.Epilepsy since 14 now aged 68, "nightmares"?

Support for you

T.E.A = Transitory Epileptic Amnesia

Effects of Fycompa for Juvenile Myoclonic Epilepsy? Had epilepsy for over fifty years, thus been through most of the 'selection' ,WORST!

Search posts

Pinned Posts

Latest poll

Why Did you join this community?

Topics

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