I don't know where to start

In 2017, I was mid argument with my partner in the car and he had a seizure. I did not know what to do. I was terrified. He came to pretty quickly.

My partner hates medication… he will not even take a headache tablet and he hates doctors/hospitals as he has had a lot of deaths in his family so he sees hospital as somewhere people go and don’t come out of rather than a place to get better. So he was obviously very adamant that he could deal with seizures without medical help.

We argued about this a lot and eventually he went to hospital one day when I was at work. He had some tablets but had ripped off the label so I couldn’t see what they were. He was taking them but they left him quite ‘mongy’ - he would be so tired he would fall asleep sitting up, dribble etc. He hated them and stopped taking them. He said he was tested for epilepsy - it wasn’t that. He used to do mixed martial arts and said there was a shadow on his scan that was most probaby caused by a blow to the head. There was no proper diagnosis, no paper work, no nothing.

I am so angry that he cut me out of the whole thing. He makes it all about him and of course it is, but he used to get so depressed and angry. He couldn’t really work but didnt want to claim benefits. So the financial strain we were under was horrific. I used to have a perfect credit score, credit cards etc as I earn good money but with one income I couldn’t make my payments and everything was in arrears/defaulted. I now have a rock bottom credit score and we struggle every month. He has since gone on unemployment benefits (but will not get assessed for a disability allowance) so that has eased it slightly but you dont get much for that. There were a lot of times we didnt even have enough food in the house. He needed all round care as when he has a sezure he is exhausted but I had to work so that was a hard balance. I used to cry on the way to work as I would need to leave him fitting.

Its just too hard. He got better but the fits have started again and I’m feeling burnt out already

Welcome to the forum aec83x

After a virus and bad fever in late 2002 I suffered two tonic clonic seizures. I then developed epilepsy which is now uncontrolled. I sympathise greatly with both you, and of course your partner.

Life changed immediately for me, even before the epilepsy established itself. Nominal aphasia and much more general memory problems have made it very difficult for me to speak fluently, as before. My former GP suffered from uncontrolled epilepsy and was a wonderful person, extremely understanding yet practical, and willing to discuss not just my epilepsy but his own and how it had affected him and his career. Unfortunately for me he retired. GPs have been very poor since.

At last I have been given a telephone appointment with a neurologist for this October. Try to convince your partner to see/speak to a neurologist. It wasn’t easy getting to see these people at the best of times but with the virus it can only take much longer. I suffered another tonic clonic on August 16th and I really want to speak to someone who is willing and able to discuss my condition. The side effects of my meds are bad and I understand your partner’s reluctance to take anything but, if his seizures aren’t caused by epilepsy, who knows what treatment might be available? It is certainly worth getting a referral.

Good luck with everything to you both, David