I just want to talk to someone who understands

[KaiKai_B]

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 helpful than I ever expected it to be but since I reached the end of my time with them there have been a number of developments and I wish I still had someone to talk through things with.

My friends, colleagues and family are all incredibly supportive but sometimes I just wish I had someone who has been through/is going through these things to chat to.

I live too far away to benefit from any of the Epilepsy Action support groups and apart from coming on this forum I don't know where else to turn.

I'm sure I can't be the only one suffering so if anyone ever wants to chat or vent or anything, feel free to send me a message.

[Lindylou77]

My son was diagnosed about 6 months ago I find it really difficult to cope with this I found a great Facebook group that's good for talking to people or getting advice x

[sloan44]

Hi. Names John and have had Epilepsy for years. It can be a pain at times. If you should want to chat just let me know. I'm in the U.S

[Bookworm01]

Hi, I have had epilepsy for ages and I was feeling exactly how you felt before I used the 1 to 1 service at Epilepsy Action. I have found it extremely helpful, but I know what you mean as my time there is coming to a close too. I'd be happy to chat about anything, I know how difficult it can be when you don't know anyone else in your life who understands.

[KaiKai_B in reply to Bookworm01]

Hi, thank you for your message. I'm really struggling at the moment. I'm 3 nearly 4 weeks into adding lacosamide into my daily med in take and its kicking me in the *** to put it bluntly. I know I have to fight through these feelings and cope with them until I've been on the full dosage my specialist has advised. Before I could write things down and discuss them in my 1 to 1 chats but I don't have those chats to look forward to anymore. I'm frustrated with myself mainly but sometimes I get frustrated with those closest to me. One minute they are telling me to slow down, worry about my own well being etc but as soon as I try I'm made to feel like a bad person for doing that!

[Bookworm01 in reply to KaiKai_B]

Oh I totally know what you mean! It's so frustrating, especially because you know they'll never understand what you're going through, no matter how hard they try. I appreciate where they're coming from, but sometimes I just want to talk to someone who gets it! And, adjusting to new meds is so rough, I get it, I promise! I've been slowly increasing my current meds and even though my consultant told me 2-3 weeks per increase, the last two I did I had to wait 2 months before I could increase again because it just totally knocked me! Luckily we have this forum, and Epilepsy Action do have online events, and I'm sure there are Facebook groups too!

[Memyselfandi1]

Hello try MyEpilepsyTeam app lots of people on there, and information, I wish you well.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Kaikai_B

It's good to hear you found our 121 chats helpful. It's also good you are reaching out to find other ways to talk to people who understand what it's like to live with epilepsy.

So, I hope hearing from others in this community helps.

Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support virtual groups epilepsy.org.uk/support-for...

Talk and Support face to face groups epilepsy.org.uk/support-for... - we are opening more face to face groups so please do keep checking.

Regards

Diane

Helpline Team

Epilepsy Action