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Epilepsy Action

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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

•3 days ago

5 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

•7 days ago

1 Reply

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

•8 days ago

3 Replies

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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

•9 days 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

•12 days ago

Be the first to reply

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

•1 month 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

•1 month ago

3 Replies

hello

Brighton (East Sussex)

sab1980

•1 month 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

•1 month 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

•1 month 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

•2 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

•2 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

•2 months ago

10 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

•2 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

•2 months ago

21 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

•2 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

•2 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•2 months ago

Be the first to reply

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

•3 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

•3 months ago

4 Replies

Post-stroke epilepsy?!?

Hi. My first post on here, nice to meet you all. I was just wondering whether anybody on here has any experience of post-stroke epilepsy? I had a massive...

Hi. My first post on here, nice to meet you all. I was just wondering whether an...

Jmattless19

•3 months ago

1 Reply

Medication change

Good morning Advice appreciated please My son 20yrs old suffers focal seizures and tonic clonic sometimes partial absence too. He has learning difficulties,...

Good morning Advice appreciated please My son 20yrs old suffers focal seizures ...

Shancock

•3 months ago

8 Replies

Does your dog's loyal presence offer reassurance?

Epilepsy and Dogs Does your dog's loyal presence offer reassurance? We would like to learn more about how people with epilepsy feel about dog ownership,...

Epilepsy and Dogs Does your dog's loyal presence offer reassurance? We woul...

EpilepsyAction1

Partner•3 months ago

1 Reply

norithistorone

hi, have many people heard of and used the above tablet? I’m thinking of taking them because I’m going away and due on my period at that time. So I want to...

hi, have many people heard of and used the above tablet? I’m thinking of taking...

Junny123

•3 months ago

3 Replies

periods and epilepsy

I have seizures every time I am coming up to my period and during my period for every period!

I have seizures every time I am coming up to my period and during my period for ...

NicEllaDawn

•3 months ago

1 Reply

Periods and Epilepsy

Does anybody find that just before and during their periods they tend to have a lot of seizures? I struggle with this every month and it is a real challenge...

Does anybody find that just before and during their periods they tend to have a ...

NicEllaDawn

•3 months ago

5 Replies

night seizures

Hi, my friend had a nocturnal seizure (while asleep) last september 2023, wasnt allowed to drive for 6 months from the date of the seizure and after mri’s on...

Hi, my friend had a nocturnal seizure (while asleep) last september 2023, wasn...

Nataliexxxxxxx

•3 months ago

8 Replies

Has anyone ever experienced this before?

I cant remember what it was called it was a strange thing beginning with T I will get my GP to write it down for me when I next see her in a few days time that...

I cant remember what it was called it was a strange thing beginning with T I wil...

NicEllaDawn

•3 months ago

5 Replies

Health unlocked

This site is great and very interesting

Emmajenny2024

•3 months ago

Be the first to reply

Is there examples of when a person has a seizure, they might burst out swearing, quite loud, quite out of character for that person?

I have JME epilepsy, had it for over fifty years, but have heard that a person is badly upset by my swearing at them, they being ignorant of my usual self and...

I have JME epilepsy, had it for over fifty years, but have heard that a person i...

Adlon57

•3 months ago

5 Replies

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Posts - Epilepsy Action | HealthUnlocked

Epilepsy Action

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!

Post-stroke epilepsy?!?

Medication change

Does your dog's loyal presence offer reassurance?

norithistorone

periods and epilepsy

Periods and Epilepsy

night seizures

Has anyone ever experienced this before?

Health unlocked

Is there examples of when a person has a seizure, they might burst out swearing, quite loud, quite out of character for that person?

Search posts

Pinned Posts

Latest poll

Why Did you join this community?

Topics

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