How to cope with epilepsy?

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Patients Epilepsy

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Posted on

how you live and cope with this

Beginning of the discussion - 20/04/2018

How to cope with epilepsy?

• Ambassador
Posted on

Hi Pixiecookie,

Epilepsy is a complex condition, and it depends on what types of seizures one has and also how it affects the individual on a daily basis.

I have had epilepsy now for 46 years and found that acceptance is the most important way to live with one's epilepsy/condition. Once you have accepted the fact you have epilepsy, then you must have patience and understanding of it. 

We all have our good and bad days, but live one day at a time... Am always here if you need to chat to find out more! 

How to cope with epilepsy?


Posted on

I too have had epilepsy since birth (40 years in August 2020). For me I know no difference of living a life without epilepsy to then living a life with it.

I suffer from Left Temporal Lobe epilepsy and it affects memory, information retention, poor cognition and difficulties in following instructions. 

I had brain surgery 8 years ago this month to resect a benign tumour.  I had several seizures every single day pre operation,  despite taking medication without missing a dose. 

The operation has lessened my seizures to once a week but I am now more anxious as I feel that I need to prove myself. As I'm not seizure free,  I can't pretend that nothing is wrong with me. I still can't drive, have lostmy job on incapability and feel maybe I'm being selfish here. Prior to my op, my anxiety was having a seizure and drawing attention to myself. 

That is gone only to be replaced with another set of anxieties, which is I gather common among most adults with responsibility. 

Married , no children due to infertility on my part. Called Azoospermia with evidence connecting Epilim and the seizure condition I suffer from. 

I worked exceptionally hard to go to University to do a degree. Was given extra time in exams to compensate for the seizures.

Little did I know that academic success for my condition doesn't lead to career success.

How to cope with epilepsy?

• Ambassador
Posted on

I've reached the 46 year mark now with epilepsy, but won't give up the fight to find a cure. After brain aneurysm surgery last year my epilepsy medication was changed. It lasted 8 months but I just couldn't take all the side effects so requested another change.

I'm in a process of weaning off one medication, taking a new one and trying to control the dosages at the same time. 12 weeks of madness, but must admit, it got my mathematics and calculations in order! 

We all face struggles, one day is good, one is bad but remember stay strong and have the determination to carry on! 

How to cope with epilepsy?


Posted on

@lesmal‍ I agree, I think one of the first steps to coping, like in many things, is acceptance. Epilepsy can put restrictions on certain aspects of your life, but it opens so many doors to other things. You have to accept the bad to also accept the good.

How to cope with epilepsy?

• Ambassador
Posted on

@EPandMe‍ Acceptance is the key to coping with epilepsy as you stated. 

Its been a long journey, but has given me more strength and determination to carry on and support others. So many memories are still vivid, but my passion is to daily advocate and educate people with epilepsy... I love being a member of other epilepsy organisations and enjoy doing research on Google to broaden my knowledge.

Stay strong and glad to have another person on the site with epilepsy!   

How to cope with epilepsy?


Posted on

Since I was diagnosed with epilepsy in November of 2002, I have just got on with it. As my partner at the time didn't really care, neither has anyone since then, now I have to take methotrexate for rhymatiod arthritis & am on sertilin for depression and anxiety high dose. But I live alone and fell over couple of times 2 weeks ago and now I'm scared of leaving my house to go get bit of shopping incase I fall over again

How to cope with epilepsy?


Posted on

I was diagnosed  as a child 43years ago I have tried to get the best jobs I can but mention a condition  an 90% of my applications hit the bin i can drive and do most things played ice hockey in goals for 30 years and played golf at a reasonable  level the condition has held me back as in career choices  but come in handy when unemployed  as we qualify  as disabled  workers if we want to use that gives us more retraining options easily

How to cope with epilepsy?

• Ambassador
Posted on

I've been on Topiramate for over 12 weeks now and had a seizure in a shopping centre in November which sparked a teleconsultation with my Neurologist on 15th December. After 4 medications later, he now says he wants to do 5 day EEG video telemetry for further investigation. I'm currently waiting for a copy of a letter to my GP regarding the next step. 

Has anyone had this done and if so, was it successful? 

How to cope with epilepsy?

• Ambassador
Posted on

Just received my letter from the Neurologist copied to my GP. Now it means a reduction in dosage by 25mg Topiramate every 2 weeks until required dosage is reached for more testing. 

I still have a query which the Neurologist won't answer; hormones. I am hypothyroid and take Levothyroxine 75mcg daily but notice a seizure pattern every 2/3 weeks.

Any other ladies find that they have this pattern? 

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