My partner is struggling with his recent diagnosis of epilepsy

[HellsCooper]

hi, my names Ella and my partner recently got diagnosed with focal epilepsy. He’s started a round of medication and despite being on it for three months now his doctors still haven’t checked up on him.

He’s become rather depressed by his diagnosis and he feels like he’ll never have a normal life. I’m doing my best to support him and encourage him through this new process but I don’t have any experience with dealing with it.

I’d really appreciate any stories you guys could share with me about how you overcame your diagnosis. How did you find returning to work? Learning to drive? Have you managed to maintain your education (he really wants to be a lawyer but he’s scared he wont be able to retain information about the course)? Have your symptoms become more manageable? Have you found any helpful support groups? What helps you manage your symptoms? What triggers have you noticed?

Hope everyone’s okay, sending lots of love and thank you for any responses <3

[Anonite]

Hi Ella, It is definitely hard coming to terms with epilepsy but there is most definitely the possibility of your partner living a full life especially if his epilepsy is controlled with medication. My son was diagnosed 2 years ago and is now just over a year controlled with medication. He is in University and has a part time job he socialises like everyone else. His friends all know about his diagnosis and they treat him exactly the same as they did before. It is frustrating the lack of follow up from the hospital/ neurologist as especially at the beginning of an epilepsy diagnosis there are so many questions. I don’t know what medication your partner is on but if he was generally happy and upbeat before epilepsy it could possibly be the medication that is affecting his mood so negatively- might be a reason to contact the neurologist. I think my son’s trigger is lack of sleep but I worry about everything 😂Hope things work out for both of you and if you want to ask me anything else don’t hesitate ☺️

[HellsCooper in reply to Anonite]

Thank you so much Ruth, that’s really helpful. I’m so glad to hear about your sons recovery, and it does really put me at ease the amount of time it’s taken for him. I know everyone’s different, but Kieran’s has found it so disheartening that it’s been so many months and he’s not noticed any changes (I have explained to him that these things don’t happen over night of course but he’s an impatient sod).

Kieran was really happy when I first met him but I think it’s the diagnosis and loss of his old life that has made him so depressed. Hopefully this will help egg him on.

What do you guys use to monitor your sons seizures? We were looking into a watch x

[Anonite in reply to HellsCooper]

Hi Ella,

At the beginning we wanted my son to get a watch but he said no he was 17 and I think he felt we were trying to control everything, I was very worried and constantly checking up on him which he hated. My son is very head strong he doesn’t particularly like talking about his epilepsy he knows his medication is working so is very good to take his tablets His first medication didn’t work and he was so disheartened and angry, to be honest he lost complete confidence in the epilepsy nurses and neurologist but looking back the advice they gave was right in the end. It is very frustrating that it seems to be all trial and error I don’t think people who haven’t actually experienced epilepsy understand that every day you are waking up thinking is another seizure going to happen or have I taken my meds life becomes less carefree and you constantly have epilepsy on your mind. It completely changes everything so it is completely understandable what Kieran is currently going through.

Hopefully with time Kieran will get control and start getting his old life back. If it’s been a few months and he is not seeing any difference I think the Neurologist should be at least increasing his meds or adding a new one, when my son had his 3rd seizure they upped the dosage of his medication then and three more times thereafter until they realised it probably was not the right one for him. Lamictal was added which seems to be doing the job.

Wishing Kieran and you all the best and again don’t hesitate to reach out if you have any further questions ☺️