Scared of having seizures

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I had two seizures sept '23 which lead to my diagnosis of grade 2 oligodendroglioma, and since then have been on a small dose of levetiracetam. Post op I had no sign of seizure activity and was focusing on physical rehab. Out of the blue (like everything) I had a focal seizure leading to a generalised tonic clonic seizure with little warning signs. I am awaiting an MRI scan and they think it's due to post op scarring. It was decided that active surveillance was best for me at present. My keppra has been titrated from 500mg to 750mg BD.

I feel like im just waiting for another one to happen and im so scared. I was ready to pay for a bus pass and start hobbies again and think about getting back to work (because I want to, I want to live). I have constant headaches so I think an appt for my MRI and to see my surgeon again would help. 

Any suggestions of trying to be less anxious, or moving on are most welcome.

Im 33 and a nurse and now terrified of hospitals :(

  • I have had hundreds of seizures. I have taken lamotrigine, keppra and tegretol and clobazam as emergency. Tegretol by far the best. The one and only thing that stopped the seizures dead was lack of active cancer, which was after the 3rd and 4th surgery. Whereas the first two surgeries left tumour inside and the seizures came soon after surgery. The cancer eventually catches up and seizures start again. I stopped taking lamotrigine and later, keppra, just a few months in. I took tegretol for a bit longer then decided it was a waste of time. My seizures were always focal and not generalised. Many of them came suddenly and many I had warnings. Just thinking about the seizures feels like I am going to get one so I stop here. In my experience seizures only come when the MRI enhances, or maybe a few months before the MRI catches up. Get rid of the enhancement and the seizures go away. To get rid of the enhancement you need a good surgery or CCNU. This is my personal experience only.

  • Thank you for your experiences and reply. 
    I suppose our diagnosis are a little different but also similar too. Good to hear from you all these years after your diagnosis!

    They got 90% of the tumour. But post surgery I lost power of the left hand side of my body for 6 weeks and learnt to walk again. So it was def the right thing to leave that remaining 10%. And I had been so well post op except the hemiparisis complications. Not the surgery or tumour. Never had headaches. Nothing. So although I had a few seconds of warning signs it still came as a huge shock. Just horrible. Can’t wait to see my surgeon and nurse specialist. 
    I had a brain ct in A&E and that seemed unchanged. So I’m hoping the mri will be too. I was so hopeful before but now I’m worrying a little more. There is a lot of room for titration with my keppra too, so that’s something. 
    Just so scared. But you’re right, when I think about it, I feel worse. The busier or more distracted I am the better. 
    take care, many thanks!

  • Hi SNunknown

    Seizures are scary so I understand your anxiety about it happening if you are out and about. You don't mention what kind of seizures you have experienced. 

    My late husband had various spikes of focal seizures. Most of them only lasted a minute or so but there were a few bigger ones so he ended up on a high dose of Keppra and at the time the Dr added in some steroids too until things stabilised.

    Everyone's experience is different but a good starting point might be a call to your medical team if you don't have any appointments soon. It might just be a medication tweak that's needed or perhaps they can suggest some coping techniques too or perhaps even some counselling support. 

    This community is a safe and supportive space so I'm sure that some of the other members will be along with their words of wisdom shortly.  The helpline is also there if you prefer to reach out and speak to someone.

    Don't be too harsh on yourself for being scared...you're going through a lot and being scared is allowed. Take this one step at a time. 

    for now though I'm sending you a huge virtual hug and lots of positive energy and strength.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I had an appointment with a neurologist and she referred me to an epilepsy service who can review your situation and offer alternatives 

  • Hi and hope you’re feeling ok. I can only go by my experience as the others have said; everyone’s symptoms and post op treatment s and abilities vary. Luckily I was just weakened my left, my seizures stopped after surgery but I still had the feeling of discomfort in my arm and any loud noises etc or irritations would get me uncomfortable and flinchy ( if that’s a word); my arm would Fletcher up like a spasm  

    I imagine you’ve had radiotherapy and/or chemo? these can drain you and not help with physical and mental wellbeing for ages after. Like Wee Me says- your medical team are there for you ( sounds like you got them V️)

    I’m on lamatrigine and clobozam, so I like to think I’m on the right balance ( it was tweaked up slowly to a high dose, not bang- full on). It takes time for the body to adjust. I’ve bogged mine so won’t bore you lol. And your right, whatever can distract you or keep you in a good mind set will help but again balanca is key. You need your rest/you need your train of thought to be calm/settled whether that’s work/kids/walks etc etc. just don’t over do it. 

    Your journey is yours but I hope the care and support you need will be always with you. As we are here for you  stay safe

  • I had my first seizure back in early 2015 when I was 24, and it led to the diagnosis of my tumour from a MRI scan, And I have been seizure free for almost 4 years now, but I am still scared or even paranoid of seizures. I am taking max dose of Keppra and lacosimide to keep the seizure under control.

    At the beginning, the seizures always happens when I was sleeping, and there was not much fear as I don't really know what's happening, I only realised what's broken after I became conscious again. But the seizures changed during 2016, it started happening when I was awake, and it was very scary. When I have seizures, my right hand starts shaking uncontrollably, and I want to says something, but I cannot. Then I will feel great pain, and I scream in my head but no one hears me before I fall unconscious.

    I remember I was seeing this clinical psychologist after surgery, and he actually asked me what I am afraid of about having seizures, seemingly thinking that I was being unreasonable. So I told him that I am scared of not waking up after falling unconscious. And he told me about some statistics of people not waking up after falling unconscious due to seizures is nearly zero. I was reassured but I also realised that the fear is not understandable by someone who hasn't experienced it in person.

    I totally understands when you said you r just waiting for another one to happen. I had this exp too, and to make things even worse is that my mother doesn't want me to take too much medicine, so she discouraged me to do so. So it took longer than usual for my neurologist to get to the right dose. I think the only way is to wait, and tell ur neurologist if it really happened. And hopefully ur neurologist will quickly find the min dose that can control ur seizure.

  • Thank you for sharing!

    I was having seizures asleep but thought nothing of the until I had a tonic clonic out and about. Since then they've all been when awake Disappointed
    After my tumour resection I didnt have one for 16 weeks! Then they re appeared. The first one in jan was hard to get over. The second was a little 'easier' but that is def NOT the word. 

    The pain and no one being able to hear you sounds horrible, I cant imagine.

    I was referred to clinical psychology and was in for over 5 weeks, yet saw no one. At that time I wasn't having seizures so I doubt it would have helped anyway.

    My tumour is 'rare' so ive learnt that statistics mean nothing. Im a nurse so have witnessed my fair share of seizures, different types, situations, treatments, outcomes. But now it's SO different!
    My fear is how its going to effect my life, will they continue to ruin my brain and how all I am now, bc inevitably YES, they will if they continue.
    My surgeon has been AMAZING and suggested radio and chemo now to get more control of these, as THEY are the issue not the tumour at present.. in a strange and weird way.

    My fear of radio is the swelling on the brain and radio. Fire everything else at me, but that scares me.

    You're so right! the fear cant be understood. And that is good thing too!

    Im still waiting to see neurology too.. so.. cant say much about them. They control my keppra doses yet who knows when I'll are see them!

    Take care.