To give you all a quick background, I was diagnosed back in the year 2000, aged 16, with Secondary Generalised Epilepsy. I had good and bad periods of seizure control but after 7 years of treatment with Lamotrigine my seizures eventually stopped.
I was then seizure free for 13.5 years and during that time I qualified as a nurse, I met my husband, we have had two children, I volunteer and I have been driving for 10 years. Life was so normal and although I knew I had epilepsy it was no longer a part of my life.
Sadly though, after 13.5 years of being seizure free I suddenly and unexpectedly had one (tonic clinic) last August and the stability of my life went out the window and the knock on effects were huge. A Consultant said the seizure was most likely a one-off due to an issue with my medication at the time so no changes were made to my treatment and I was just basically on a countdown to getting my licence back and waiting for my life to return to its previous state of normality. It ever occurred to me that I’d have another seizure.
Sadly though, 5 weeks before I was due to get my licence back I had another TC seizure - this happened about 4 weeks ago.
I feel like my world has been turned upside down and I feel so lost.
Blood tests in A&E showed that I was severely anemic, and deficient in B12 and Phosphate which epilepsy nurse said was probably the trigger to my seizure.
Even if there is a trigger I still feel distraught that my epilepsy is back. For 13 years I have been able to lead a normal life and now I feel like I’m right back at square one again. And I feel frightened.
My husband has never had to deal with the reality of my epilepsy before as I’d been controlled for 5 years before I even met him. He’s now gone from having a stable home life and a healthy wife to now having a wife who is petrified and constantly crying.
I’m petrified of being alone with my children (aged 3 and 6) in case I have a seizure.
I wake up every morning scared I’m going to have another seizure and I swear I’m having mini panic attacks at times - I just have this wave of dread come over me that I’m going to have a seizure.
I’ve had my lamotrigine dose increased and I just feel so, so low. The knock on effect this second seizure has had on my life has been even worse than the one I had last year. I feel like I’ve lost everything.
I’ve never had to deal with having epilepsy whilst being a mother and I just don’t know what to do. Thankfully my husband is off work at the moment (teacher) but I’m already panicking about when he goes back because I’m scared to be alone with my children.
I don’t even know what I want from this thread - I just need to talk to people who understand what it’s like to live in this kind of fear.
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General health
Does anyone have epilepsy?
2 replies
QueenofmyPrinces · 22/07/2020 10:05
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