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Epilepsy Action

3,080 members • 1,171 posts

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Living alone options

Luckily with the horrible housing market I've had an excuse to not live alone. But hopefully in the next couple years my son and I will be getting a house....

Luckily with the horrible housing market I've had an excuse to not live alone. B...

•20 hours ago

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Focal epilepsy/ tonic

Hi juat looking if someone can help. I have a child who has autism with a learning disability, who had a full tonic clonic seziure lasting 10 mins in 2017....

Hi juat looking if someone can help. I have a child who has autism with a learni...

•2 days ago

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Sweats at night

Hiya guys does anyone get really bad sweats when trying to sleep

Hiya guys does anyone get really bad sweats when trying to sleep

•11 days ago

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Has anyone used Sleep Well sachets

Hi everyone Just a quick question. My sleep has been dreadful for many years. A few years ago I was referred to Endocrinology & found that I had been under...

Hi everyone Just a quick question. My sleep has been dreadful for many years. ...

•14 days ago

Medication decision

Hello My partner was diagnosed epileptic after a seizure and some fainting episodes last year. He has only ever had one seizure. After tests and appointments...

Hello My partner was diagnosed epileptic after a seizure and some fainting epis...

•20 days ago

Home Adaptations

My brother suffers from steadily worsening seizures, which unfortunately are not controlled. The council have agreed to replace his bath with a shower to help...

My brother suffers from steadily worsening seizures, which unfortunately are not...

•20 days ago

Dental implants NHS Epilepsy

Hi I'm 53 and have been Epileptic for approximately 18 years. During this time many of my teeth have been considerably damaged due to grinding my jaw. Having...

Hi I'm 53 and have been Epileptic for approximately 18 years. During this time ...

•20 days ago

I have a broken skull, from a double seizure, in Jan. 2018, I suffer from severe equilibrium, dizziness, when getting up, sitting down!

Surely there must be someone else who has broken their skull, and suffers similar symptoms? How do you cope with it? I have epilepsy but maybe someone has...

Surely there must be someone else who has broken their skull, and suffers simila...

•27 days ago

Tiny folding implants improve epilepsy surgery and diagnosis

Tiny folding implants could make epilepsy surgery safer and improve diagnosis, say UK researchers....

Tiny folding implants could make epilepsy surgery safer and improve diagnosis, s...

EpilepsyAction1

Partner•1 month ago

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16 year old daughter recently diagnosed with frontal lobe epilepsy and started meds

hi, so my 16 year old daughter has recently been diagnosed with frontal lobe epilepsy and started Lamotrigine 2 weeks ago. Her epilepsy team advised her to...

hi, so my 16 year old daughter has recently been diagnosed with frontal lobe epi...

•1 month ago

Single parents with kids with epilepsy

Hello there, I'm a single mom with 8 years old boy 👦 with epilepsy and looking for another mom like me..to chat with, to shere,to support each other 😊

Hello there, I'm a single mom with 8 years old boy 👦 with epilepsy and looking ...

TsvetelinaFlower

•2 months ago

seizure monitor for child

our 7 year old has possible epilepsy-the process of diagnosis is proving to be lengthy but that’s looking like the most likely outcome. The paediatrician has...

our 7 year old has possible epilepsy-the process of diagnosis is proving to be l...

dandelioncupcake

•2 months ago

Inquiring for my husband

My husband is 78 and in Nov. 2022 he had 3 horrible spells of nausea following some dizziness first thing upon waking about 10 days apart and some lesser ones...

My husband is 78 and in Nov. 2022 he had 3 horrible spells of nausea following s...

•2 months ago

Epilepsy Action launches TV first aid campaign

https://www.epilepsy.org.uk/epilepsy-action-launches-tv-first-aid-campaign

https://www.epilepsy.org.uk/epilepsy-action-launches-tv-first-aid-campaign

EpilepsyAction1

Partner•3 months ago

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Severe lack of motivation

having developed Trigeminal Neuralgia in 2023 from the impact of my Acoustic Neuroma, I started Carbamazepine in Dec 2023. Although this has reduced headaches...

having developed Trigeminal Neuralgia in 2023 from the impact of my Acoustic Neu...

•3 months ago

When they say anti seizure medication 'prevent seizures from happening' what EXACTLY does that mean?

I haven't had a tonic clonic seizure since 2022. I have still been having focal seizures which are much more under control since the introduction of...

I haven't had a tonic clonic seizure since 2022. I have still been having focal ...

•3 months ago

new to all this and scares

hi my 19 year old daughter had her first and second seizure 4 days ago. Waiting for a neurology appointment at the moment. Am trying not to panic but tonight...

hi my 19 year old daughter had her first and second seizure 4 days ago. Waiting ...

•3 months ago

Topiramate use in pregnancy: MHRA safety guidelines tightened

https://www.epilepsy.org.uk/topiramate-use-in-pregnancy-mhra-safety-guidelines-tightened Topiramate should not be prescribed to women of childbearing...

https://www.epilepsy.org.uk/topiramate-use-in-pregnancy-mhra-safety-guidelines-t...

EpilepsyAction1

Partner•3 months ago

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Cat Deeley apologises after Epilepsy Action supporters call out “thoughtless” comment

This Morning presenter Cat Deeley has apologised on the show today, after being called out by charities and people with epilepsy for “careless use of language”...

This Morning presenter Cat Deeley has apologised on the show today, after being ...

EpilepsyAction1

Partner•3 months ago

UK driving licence reapplication after fit

Hello All.I suffer from severe coronary heart disease and hypertension. After a change in my medication in Jan this year I had a fit and blacked out. I have...

Hello All.I suffer from severe coronary heart disease and hypertension. After a ...

GrumpyYorkshireman

•3 months ago

Patient Initiated Follow Up

Hi just wondering if anyone has been given this. My Neurologist said that if I didn’t contact them during the next 12 months I would be discharged. I’m...

Hi just wondering if anyone has been given this. My Neurologist said that if I d...

•3 months ago

Tegretol (carbamazapine) supply?

I wonder if anyone else has the same problem with their supply of Tegretol? My doctors pharmacy does not seem able to get it for me and I have had to go miles...

I wonder if anyone else has the same problem with their supply of Tegretol? My ...

•3 months ago

Living with someone Bipolar

Hi there Ive had epilepsy my whole life. A person Im with that has bipolar sometimes makes my seizures worse. She gets mantic when things happen like family...

Hi there Ive had epilepsy my whole life. A person Im with that has bipolar somet...

•3 months ago

Breakthrough Seizure After 10yrs - Shocked and Uncertain - What do I do?

Hey everyone. So I'll cut to the chase - I grew up with generalized epilepsy in my teens. Had a mix of focal and tonic clonics throughout the ages of 11-18....

Hey everyone. So I'll cut to the chase - I grew up with generalized epilepsy in ...

•3 months ago

Desitin Pharma lamotrigine recall

10 June 2024 The MHRA have made us aware of a recall issued for lamotrigine 10mg/ml oral suspension made by Desitin Pharma. This recall is a precautionary...

10 June 2024 The MHRA have made us aware of a recall issued for lamotrigine 10...

EpilepsyAction1

Partner•3 months ago

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working with epilepsy

Hello, I am just looking for a little bit of advice. I am currently working full time almost 40 hours a week for a care home. I have told my employer about...

Hello, I am just looking for a little bit of advice. I am currently working full...

•3 months ago

concerned my daughters heart is stoping during the night

Daughter has had 4 focal to bilateral tonic clinic seizures since September 2023, these have occurred when either sleep deprived, during sleep or shortly after...

Daughter has had 4 focal to bilateral tonic clinic seizures since September 2023...

•3 months ago

Talk and Support Groups

Epilepsy Action -our online Talk and support groups are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed...

Epilepsy Action -our online Talk and support groups are a great way of connectin...

EpilepsyAction1

Partner•4 months ago

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Guidelines

Hello all It's fantastic to see members of the community sharing experiences with one another. Our community has some important guidelines to help keep this...

Hello all It's fantastic to see members of the community sharing experiences wi...

EpilepsyAction1

Partner•4 months ago

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Join Epilepsy Action membership today. “Being an Epilepsy Action member reminds me why I’m not alone.”

Join a community of more than 7,000 people, who are passionate about creating a world without limits for people with epilepsy and access exclusive benefits....

Join a community of more than 7,000 people, who are passionate about creating ...

EpilepsyAction1

Partner•4 months ago

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