Seizure Anxiety…

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Hi all. New here and just wondering how people are navigating anxiety around seizures. 

My partner has just been diagnosed with neck cancer which has spread to the brain and lungs. He had 2 significant seizures yesterday, one at home and the second in hospital in the A&E waiting room. 

We are home now but I’m a bag of nerves and anxious about more coming. I’ve never felt so out of control of a situation in my life. How do people navigate this? I don’t want to let him out of my sight but have to work…

Any insights / advice welcome. Thanks in advance and best of luck with what you are all going through Green heart

  • Hi DeeHaw

    a warm welcome to the group. Sorry to hear about all that your partner is going through.

    Seizures are scary. I get it. 

    I supported my late husband through his stage 4 brain tumour journey and we had some issues with seizures so I can empathise with your fears. Quick question, has your partner been prescribed anti-seizure medication? G was prescribed Keppra and that kept the  seizures at bay successfully for almost 3 years. He had one out of the blue two days before his surgery and to be honest, that was the only major one he had. What he experienced further down the line was focal seizures and the early warning sign was that the hairs on his arm all stood on end. Weird but true. Those lasted anything from a few second to twenty minutes but there were other drugs that the medical team could give him to reduce them. Is your partner aware of any triggers or warning signs?

    This is a safe and supportive space so I am sure some of the other members will be along shortly with their words of wisdom. 

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    love n hugs

    Wee Me xx

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

  • Hi DawHee.  I know exactly how you fell.  We all had the same concern when my mum was diagnosed with glioblastoma stage 4. It presented as I seizure before and couple in a and e. However since that time (6 months ago) she has not had any. We were expecting this to be a regular side effect and were anxious about it too. She’s on anti epilepsy medication which must be doing the trick. We also spoke to the neurology team and got the number for the epilepsy nurse so we could prepare incase she did start taking them. By learning about how to deal with them it gives you more confidence but still the last thing you want your loved one to go through. Maybe reach out to your contact at hospital. I totally understand the uncertain and scary position you find yourselves all in. Look after yourself and remember you are not alone in this. Even though it feels you are the only person going through this right now