Epilepsy Action
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Please help! Epilepsy and anxiety plus everything else!

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.

3 Replies

I totally feel your pain. I'm on lamictal and keppra. I started keppra 250mg twice a day, 3 weeks ago and I'm anxious, angry and forgetful. I'm not sure what to do either!


Hello Mango401

It sounds like you have been through a lot to get to where you are now. I can hear that this has all been quite scary for you. You have shared a lot here, so I will do my best to give you some information about the different things you have described.

Learning you have epilepsy can be a shock. Some people find that they learn to build it in to their life easily, whereas other people need time to accept and adapt. It can take time for a person who is newly diagnosed to want to learn about their epilepsy.

Maybe you could talk to your GP about how your epilepsy makes you feel, and ask how they could support you with it. There are, for example, a wide range of talking therapies which you may give you the chance to talk about your epilepsy and to look for ways to support your wellbeing in the future. More information about wellbeing can be found on our website: epilepsy.org.uk/info/wellbeing

Epilepsy is caused by a sudden burst of electrical activity in the brain. No two people’s epilepsy is exactly the same, and neither is the way it affects them. More information about epilepsy can be found on our website: epilepsy.org.uk/info/what-i...

There are many different types of seizure, and the way they affect a person depends on the area of the brain that is affected by the burst of electrical activity. You may find it helpful to take a look at our seizures explained information, which may help you to understand what has happened to you: epilepsy.org.uk/info/seizur...

It is good that you are working with your epilepsy doctor, as this will give you the opportunity to check that you are getting the best treatment for you. The most common way of treating epilepsy is with epilepsy medicines. These aim to try and stop seizures happening. With the right treatment approximately seven out of 10 people could be seizure free. More information about treatment, can be found on our website: epilepsy.org.uk/info/treatment

Sometimes a person will experience unwanted side effects as you have described, but these should pass within a few days to weeks as your body begins to get used to them. If they don’t, try talking to your neurologist or epilepsy nurse about it: epilepsy.org.uk/info/treatm...

Life with epilepsy when you have a child can present many extra challenges which other parents may not face. Keeping an infant safe in the home can be a challenge even when you don’t have epilepsy. Some people tell us that they have found it helpful to explore our tips for looking after an infant when you have epilepsy: epilepsy.org.uk/info/caring...

You may also find our general safety advice for people with epilepsy information useful: epilepsy.org.uk/info/safety

Our work information may also be useful for you. As a person with epilepsy you are protected by the Equality Act. This says that an employer cannot treat you differently just because you have epilepsy and should consider making reasonable adjustments to allow you to continue to do your job: epilepsy.org.uk/info/employ...

I can hear that you feel alone at the moment. Learning to live with epilepsy can take time. Some people tell us that connecting with other people with epilepsy has made a huge difference to them. Maybe you could take a look to see if we have a coffee and chat group or local events near you, where you could meet other people with epilepsy: epilepsy.org.uk/near-me

I hope that you find the information I have guided you to helpful. If you would like to talk about any of this in person, or if we can help in any other way please feel free to call our helpline on 0808 800 5050.


Epilepsy Action Advice & Information Team


You don't mention the level of medical help you have. If you haven't already seen an epilepsy consultant you should get referred ASAP. There is a lot of support out there and I would recommend you join the Epilepsy Society. They have arranged a conference in London in March where members and guests meet and listen to and meet experts and each other. You get the chance to talk to others in a similar position as yourself. It is well worth going and you will find a lot of support. If you need more info come back. Good luck


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