Does anyone have epilepsy?

(3 Posts)
QueenofmyPrinces Wed 22-Jul-20 10:05:06

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.

OP’s posts: |
ginandtonicformeplease Wed 22-Jul-20 10:22:35

I don't know if it will reassure you, but you do get used to it. Mine has no known triggers, it's just difficult to control apparently. I don't have seizures often, but when I do the side effects last for a couple of days.

I was only slightly older than you when I developed epilepsy (20) but while it stopped me from going into the career I wanted, and of course I no longer have a driving licence, I've learned to live with it. I was on lamotrogine for a while but found it didn't help at all - I'm on a combination of three meds and it's been the best it has in years.

Can you teach your 6 year old to call an ambulance if anything happens, in an age-appropriate way? I'm 38 weeks along with my first, and DH will be doing all the bath times!

I would say the most important thing is to find a neurologist you can trust - unfortunately the NHS is shocking for its lack of provision for epilepsy (I've moved round quite a bit so have tried a few trusts grin). My current trust doesn't employ a single full time consultant neurologist. I go private instead, and have done for the last few years - once it's stable it's twice a year at £200 a visit. I don't know if that's a possibility for you, but I get to see the same doctor every time, who has access to the latest meds and is involved in research.

You haven't lost everything: it probably sounds trite but epilepsy is one of those things you have to learn to live with - it's tough, but you'll get there thanks

LCM86 Thu 17-Jun-21 23:37:05

Reading your post has really made me feel like I’m not alone. I know we’re now a year on, but something very similar has just happened to me.

I went for 8 years without a seizure, and I recently had 3 in one evening a couple of weeks ago. It happened 3 weeks after giving birth to my second son. I think the lack of sleep, food etc caused it.

My 4 year old saw some of the second seizure and it has 100% affected him. And I feel so guilty about that. It’s plays on my mind constantly:-( My partner was amazing and had never seen me have a seizure, as just like you, this all happened before we met. But it’s definitely affected :‘traumatised him too.

I now am a bag of emotions. I feel so down about it. And I think it’s affected me so much because I’m now a mum. Like, what if it happens again and I’m on my own with the boys? I have tonic clonic seizures too and I’m completed out of it. It’s just such a scary thought.

I feel really lost right now. And so frustrating because I want to enjoy my new bubba, especially as it took us 4 miscarriages before we got him.

I feel like I’m venting and not really getting out everything I need and want to say, but your post has really helped me. I really hope a year on you are back to driving (in so pissed about giving that up again too) and that life has started to become “normal” again. X

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