Anxiety over siezure

[stepheN76]

Hi hope all are well, I'm new to the group I was diagnosed with photosensitive epilepsy at 20. I'm 43 now, I have not had a fit for 5 years now and this is giving me massive anxiety feelings as in my mind the longer I go without seizures the closer I must be getting to having one. Some days I wont leave the house if I have a headache (unfortunately I have never had warnings before hand). I have a driving licence but I wont drive for fear of having an accident. Is it normal for the anxiety to get this bad. I will only go places when on my own if someone is expecting me so if I dont turn up they will ring or contact someone. I have 3 boys and I cant enjoy myself with them because of this. Thanks for listening. Stay safe everyone ♥️

[EpilepsyAction1 Partner Epilepsy Action]

Hi. It sounds like you’re really struggling with your anxiety. Many people with epilepsy do have some anxiety. But it’s a very individual thing.

I wonder if you have tried to get any help with it? If not, you might benefit from talking to your GP about it. They may have some suggestions of things that could help. Or you could contact Anxiety UK. Their helpline number is 03444 775 774.

You might find it useful to know that the longer you go without a seizure the less likely you are to have another one. And the things to help your anxiety will also be good for lowering the risk of you having seizures.

I really hope things can become easier for you.

Regards

Cherry

Epilepsy Action Helpline Team

epilepsy.org.uk/info/anxiety

anxietyuk.org.uk/

[Wintersbite]

Hi I am like you aswell I have no warnings and I have the photosensitive epilepsy ( I have had since I was 7 I'm now 39) like you I have 3 boys unfortunately thay don't live with and I get these"gaps" in my epilepsy routing I'm actually on one right now so I'm dreading the next fit as going on my history I know these"gaps" are bad news as my fits will go up from yearly to monthly or even weekly and in some cases daily but have you heard of the Embrace watch? I bought mine last year and it helped give me peace of mind I still do my little precautions but I know my friend will be informed of any fit I will have and can get help to me. I also let my friend know know everything I'm doing from going out to going for a shower or a laydown I don't let my epilepsy control me but I do pay attention to all the signs of it and I inform my friend as a cation but I don't really like going out unless I have to or I'm meeting up with a friend but I also wear a medical tag so I'm identified as an epileptic and so help can call the correct friend. I hope this helps you out another coping method I do is as I had this from a child I imagine a cage and the epilepsy is a devil trapped in the cage ( every day I don't have a fit the devil is stuck in the cage and I'm free) but if I have a fit the devil has escaped and I have to get free from his trap and put the little thing back the longer I trap him the better it is for me ( I have even come out of a fit and when I was told I had I fit my reply was "damnit now I have to catch him again" my family and friends laughed buy the doctors where confused until it was explained and said I had a good method if I can come out of fits with this control method as a memory. I don't know how it's good but maybe it can help you out and try to have a positive spin on this like your winning a game so keep on winning. Good luck