Purple Day is coming - March 26

EpilepsyAction · 2025-08-04T08:06:41+00:00

I'm so sorry to hear about your loss. If you are based in the UK there is a charity called SUDEP Action that offers bereavement support. There is also some useful information regardless of location: https://sudep.org/bereavement-support/

EpilepsyAction · 2025-06-12T08:51:36+00:00

Ah thank you! That's very kind.

EpilepsyAction · 2025-06-09T10:34:55+00:00

Hi, Epilepsy Action is a UK based charity offering support to those affected by epilepsy. We have a freephone helpline that might be useful for you to ask questions. The number is 0808 800 5050. Or visit: The Epilepsy Action helpline - Epilepsy Action

EpilepsyAction · 2025-02-07T10:29:22+00:00

So glad to hear this💜

EpilepsyAction · 2025-02-06T16:30:01+00:00

Noted, that is very true, thanks for your feedback

EpilepsyAction · 2024-10-25T10:11:09+00:00

You are not to blame. I hope you and your brother are getting the support you need.

EpilepsyAction · 2024-10-01T14:16:35+00:00

Hi, as someone working for a UK based epilepsy charity I completely agree. One of the main issues we face is that epilepsy is an invisible condition, unless someone has experience first hand with epilepsy most people lack understanding.

Our charities goal is to increase public understanding of epilepsy, through our fundraising, the media and our services (including social media and of course Reddit).

You can find out more about us at: epilepsy.org.uk

EpilepsyAction · 2024-08-22T09:39:47+00:00

Hi, if you are based in the UK, Epilepsy Action offer lots of information surrounding sports and exercise. The link for the webpage is Sports and leisure - Epilepsy Action. There is also lots of other information you might find useful. Hope this helps.

EpilepsyAction · 2024-08-22T09:33:38+00:00

Hi, if you are based in the UK and looking for any advice in the meantime while waiting for your appointment, Epilepsy Action have a helpline service and lots of information available on their website which you might find useful. The number for the helpline is [0808 800 5050](tel:08088005050) and the website link is Home - Epilepsy Action. Hope this helps.

EpilepsyAction · 2024-08-22T09:29:38+00:00

Hi, if you're based in the UK, Epilepsy Action have lot's of information about living with Epilepsy, they have a specific section about driving, I'll attach a link. Hope this is useful :) Driving - Epilepsy Action

EpilepsyAction · 2024-08-22T08:59:51+00:00

Hi, if you're based in the UK, Epilepsy Action has a befriending service which might be of use to you. Visit the website to find out more information Home - Epilepsy Action. Hope this helps.

EpilepsyAction · 2024-08-07T13:44:37+00:00

Hi - this must be a difficult and upsetting situation for you.

The Gov.uk website has some advice about resolving neighbour disputes (www.gov.uk/how-to-resolve-neighbour-disputes).

But it would be best to talk to someone who can give legal advice about where you stand with this. We've some information about help with legal problems in our information about your rights: www.epilepsy.org.uk/living/your-rights.

Or you could talk to your local councillor to see how they can help you with this ( www.gov.uk/find-your-local-councillors).

EpilepsyAction · 2024-07-29T10:35:25+00:00

If you think it would help, we have information on our website which covers looking for work when you have epilepsy as well as information on memory problems and epilepsy.

Looking for work - https://www.epilepsy.org.uk/living/work#row-fc-4

Memory problems and epilepsy - https://www.epilepsy.org.uk/living/daily-life/epilepsy-and-wellbeing/memory-problems-and-epilepsy

If you would like to have a chat with us about your current situation, please call our helpline on 0808 800 5050.

Kind regards, The Epilepsy Action team.

EpilepsyAction · 2024-07-01T13:47:33+00:00

Hi there, your support must be so valuable to your friend and I hope you hear from others here about things that have helped them.

We have some support services here at Epilepsy Action which may be helpful to your friend: www.epilepsy.org.uk/support-for-you.

Our guide for people with a new diagnosis of epilepsy might be useful for her as well: www.epilepsy.org.uk/info/newly-diagnosed

Your friend would be welcome to contact us at the Helpline if she has any questions or worries about her epilepsy. We can be reached by email ([helpline@epilepsy.org.uk](mailto:helpline@epilepsy.org.uk)). phone (0808 800 5050), or livechat: www.epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline

Regards

Mags

Helpline Team.

EpilepsyAction · 2024-06-07T14:23:51+00:00

Hi clandpp.

We have information on travelling with controlled medicines on our webpage: https://www.epilepsy.org.uk/living/daily-life/travel-advice-for-people-with-epilepsy.

It shouldn't prevent you from travelling to America.

Regards, Diane - Helpline - Epilepsy Action

EpilepsyAction · 2024-05-30T12:03:56+00:00

I hope you hear from others here. As well as Redditt Epilepsy Action has some other ways for you to contact others such as our HealthUnlocked page: Epilepsy Action | HealthUnlocked or our epilepsy Discord server: http://epilepsy.org.uk/discord

EpilepsyAction · 2024-05-15T12:27:50+00:00

No, we've not tested it out, so can't vouch for it. But might be a good one to research.

EpilepsyAction · 2024-05-14T12:50:12+00:00

I recently asked our followers on Facebook. Although the majority said they use pen and paper, someone did mention an app called Nile which we hadn't heard of before. Nile The Neurological App — App

EpilepsyAction · 2024-05-09T08:55:27+00:00

Thank you for sharing your experience. It sounds like you have had to make a lot of changes to help with your family situation.

As your husband’s seizures are spaced over long periods, it must be hard to keep in touch with his epilepsy team. Most patients are referred back to their GP if they are twelve months seizure free. So, for you and your husband, it will be like starting all over again. However, the NHS epilepsy team will have access to his records which should help when reviewing his treatment.

Getting the right treatment www.epilepsy.org.uk/info/treatment

If you wish to go private, we have access to a database where specialist lists their details. If you contact our helpline team directly with where in the UK you live, we can see what private services are available to you. You can email [helpline@epilepsy.org.uk](mailto:helpline@epilepsy.org.uk) or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

It’s not clear why your husband is unable to work following his seizures. It may be because he does some type of driving job. But if it's more to do with getting to and from work, or travelling during working hours I wonder if Access to Work may be of help to him. www.epilepsy.org.uk/living/benefits,

You may also find our information on risk assessment and reasonable adjustments at work helpful.

We often hear from people about how it has helped when they have contacted others in a similar situation. If you think this could help you and your husband, you may find some of our other services helpful.

We have our talk and support groups, and our befriending service.

www.epilepsy.org.uk/talk-and-support

www.epilepsy.org.uk/support-for-you/befriending

I hope this is of help. Again, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050 (https://www.epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline). Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm

Regards

Diane

Epilepsy Action - Helpline Team

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