Posts - Epilepsy Action | HealthUnlocked

Epilepsy Action

3,045 members • 1,147 posts

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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 hours ago

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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 hours ago

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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...

•1 day ago

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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 ...

•2 days 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•5 days 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...

•6 days 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...

•9 days 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•13 days 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•17 days 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 a ...

EpilepsyAction1

Partner•1 month ago

Son age 8 epilepsy diagnosis

Hello My son had an absence seizure in November and a second seizure in February which was a left frontal focus seizure. He had an EEG which showed active...

Hello My son had an absence seizure in November and a second seizure in Februar...

•1 month ago

Does it really take Epileptics longer to recover from being ill?

I have had a chest infection for at least a week now doesn't seem to be getting better. Its the first time i've been properly ill since my epilepsy diagnosis....

I have had a chest infection for at least a week now doesn't seem to be getting...

•1 month ago

Two medications & more frequent seizures.

My 15 year old daughter is on 175mg Lamotrigine twice daily & 750mg Keppra twice daily. She has been on Lamotrigine for 6 years but has only just reached the...

My 15 year old daughter is on 175mg Lamotrigine twice daily & 750mg Keppra twice...

•1 month ago

Covid booster UK

Does anyone know if we can get spring boosters for Covid? I got the autumn one because of epilepsy, but it looks as though neurological conditions aren’t on...

Does anyone know if we can get spring boosters for Covid? I got the autumn one ...

•1 month ago

Cenobamate

Hi all, I'm taking a high dose of Lamotrigine and it's not working so my neurologist has suggested Cenobamate. Does anyone take both and it's working or the...

Hi all, I'm taking a high dose of Lamotrigine and it's not working so my neuro...

•1 month ago

Government plans could cut benefits for depression and anxiety

Government plans could cut benefits for depression and anxiety. The government’s plans to stop sickness benefits for some people with mental health...

Government plans could cut benefits for depression and anxiety. The governmen...

EpilepsyAction1

Partner•1 month ago

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Benefit shake up

Hi, I dont know what other people are thinking but sunaks proposal has caused some distress, anxiety is coming through the walls for me, im unstable at best,...

Hi, I dont know what other people are thinking but sunaks proposal has caused so...

•2 months ago

Low carb for epilepsy

I've been having a chat with my epilepsy nurse about trying a low carb diet. She is happy for me to give it a go and says some people find it reduces the...

I've been having a chat with my epilepsy nurse about trying a low carb diet. She...

TheCoulerPurple

•2 months ago

London Marathon 2024: Meet team Epilepsy Action

Catrin Jones, 26, from Caernarfon in Wales, is running for her daughters Esmi, 5, and Nanw, 3, who have both been diagnosed with epilepsy. Learn more here...

Catrin Jones, 26, from Caernarfon in Wales, is running for her daughters Esmi, 5...

EpilepsyAction1

Partner•2 months ago

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Fix medicine supply chain or risk patients’ lives, warn charities

Charities and pharmacists are calling for a complete review of the medicine supply chain as shortages continue to put people’s health at risk. Epilepsy...

Charities and pharmacists are calling for a complete review of the medicine supp...

EpilepsyAction1

Partner•2 months ago

new symptoms

Back in February I had to do another change in prescription for my epilepsy medication. Ever since I finished it back in March the eight week cycle I’ve had...

Back in February I had to do another change in prescription for my epilepsy medi...

•2 months ago

new symptoms

Back in February I had to do another change in prescription for my epilepsy medication. Ever since I finished it back in March the eight week cycle I’ve had...

Back in February I had to do another change in prescription for my epilepsy medi...

•2 months ago

Lacosamide increase

Last night was the 3rd night of increasing lacosamide. It doesnt seem to be agreeing with me as each night since i go to bed with a terrible headache and this...

Last night was the 3rd night of increasing lacosamide. It doesnt seem to be agre...

•2 months ago

Colds and epilepsy

My husband has passed on his cold to me. I started with a tickly cough, now nose is bunged up, coughing is rattly, more so on the right side and head feels...

My husband has passed on his cold to me. I started with a tickly cough, now nose...

•3 months ago

Talk and Support Virtual Groups

Our online Talk and support groups are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment. We have our...

Our online Talk and support groups are a great way of connecting with others who...

EpilepsyAction1

Partner•3 months ago

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myoclonic absence epilepsy

My son (now 15) was diagnosed about a year ago, on Lamotrogine. We are constantly increasing his dosage, it makes him extremely tired and he is still having...

My son (now 15) was diagnosed about a year ago, on Lamotrogine. We are constantl...

•3 months ago

New drug

Hello, My son has recently been prescribed Zonisamide. His epilepsy has not been controlled with other drugs although both Lamotrigine and Oxcarbazepine kerbed...

Hello, My son has recently been prescribed Zonisamide. His epilepsy has not been...

LakeshoreDriveKing

•3 months ago

I just want to talk to someone who understands

I'm really struggling with everything epilepsy related at the moment. I was having my 1 to 1 chats with a volunteer through Epilepsy Action and that was more...

I'm really struggling with everything epilepsy related at the moment. I was hav...

•3 months ago

starting lamotrogine and side evfects

Hello folk, my husband ( age 69) was recently diagnosed with epilepsy and prescribed lamotrogine. Waiting for MRI and first outpatient appointment. We’re now...

Hello folk, my husband ( age 69) was recently diagnosed with epilepsy and presc...

•3 months ago

carbamazepine- brain tumour

hello everyone. I do not have epilepsy. I’m hoping this community can give me some insight into Carbamazepine. I have a brain tumour that is pressing on the...

hello everyone. I do not have epilepsy. I’m hoping this community can give me s...

•3 months ago

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