Hello all! My epilepsy journey has been a long one so far and slightly complicated so bear with me!
In 2013 I fell pregnant with my partner. At around 38weeks things started to go wrong in my pregnancy and we found out I had pre-eclampsia. So I was induced. During labour, I had a seizure. This was my first ever, and it was clonic tonic. I remember my head "jerking and twitching" but to anyone else they couldn't see this, but I could feel it. I remember my head being pulled towards the light and all of a sudden my jaw was being strained to the side and my whole body felt like it was spinning in a circle and then I blacked out. It took me a few days to come round fully(bear in mind id been given a serious dosing of drugs after this). I also had a scan after due to falling and hitting my head which showed I have a cerebral anneruysm, a very small 2mm one. Then 7 weeks after my little one had arrived, I woke up with a very sore left side and bitten tongue which was a "suspected" seizure as no one was there to witness it. After this, the doctors put me on epilim 3 times a day. I had always put the seizures down to pre-eclampsia, but I guess the doctors put me straight on the meds seeing as my brother is epileptic too. I felt fine anyway, no build ups or anything. So after learning epilim is not a good choice to be on for women, I asked my doctor to switch and I got put onto Keppra, 250mg twice a day.
I'd been doing great. No seizures for two years, so they had decided to take me off the medication this February, but on January the 3rd, I had a clonic tonic seizure out of the blue. Same experience again, head jerking, head to the light, head being pulled, spinning and then gone. I was found out wondering very confused, and didn't even know what my name was. About 45 minutes after, I was absolutely fine and back to normal. I didn't bite my tongue on this occasion. I must also add, I had been mucking about with my medication as in forgetting to take it on time, missing days etc. I know it's bad, but I myself believed I didn't have epilepsy at all.
Sorry, I'm almost there!!
I got admitted to hospital and they basically told me it was my fault for mucking about with the meds, and to get back on track, which was fair enough. So I did, get back on track with my meds. I went back to work straight after, (I work as a assistant in a classroom and a manager of an after school club, Monday - wedneday). But then I had a second seizure. This one was completley different. Since that first seizure, only ten days before this second one, I had been feeling awful. I couldn't quite say what or how I was feeling awful, but I just had not been feeling right. The second seizure, I had not been feeling right all day, and then an overwhelming sensation came over me, and I all of a sudden got very shivery even though I was roasting hot. And then I started jerking violently all over. My eyes were closed and I couldn't speak but I was well aware of everything going on around me. The whole seizure lasted 18 minutes, with about 30 second pauses where I would completely stop, and then start again. While this happened I had a severe panic attack(something I'm not prone to).
I had worked myself up before the seizure as I could feel it coming on, and because I was conscious I could hear my family getting very upset around me which made me worse. I did not bite my tongue on this occasion either. Ambulance was called and I was taken up. Once I had stopped jerking, I was able to open my eyes, but I struggled extremely to get any words out. I knew what I wanted to say but couldn't say it. After half an hour, I was absolutely fine again. After my stay this time, they decided to up my meds to 750mg of Keppra a day. So far I have not had any seizures (it's been two weeks). But I still feel awful!! Is this normal for anyone else?! I can feel like a build up is happening, or get constant double vision or just not feel "right". I can also have occasional single jerks. I've spoke to specialists and they have basically just told me to sit and wait and see what happens, but I literally can't live feeling like this every day! Not with a two year old! I also need to work, and I can't feeling like this either. I am a really bubbly outgoing happy person, but recently after the med change, I'm finding myself very down and VERY anxious, neither which is like me. I understand this is a side effect of my meds, but it's been two weeks since the changeover to the higher dose? I don't want my anxiousness to control my life, which it is at the moment because of the seizures. But I also can't deal with me feeling all day like I'm having a build up to one, I'm only 21 and i have a lot planned in my future which I just can't see me doing anymore when feeling like this every day! Has anyone had anything like this, any experience, advice, support, anything at all! Please, at the moment i am surrounded by people, but I feel so alone, and so scared.