Hello everyone,
My partner (36/M) had surgery on Jan 2025 to resect what was later confirmed to be a grade 3 astrocytoma in the right mesial temporal lobe. The tumour was found incidentally and he had no seizures prior to the surgery.
He was started on keppra immediately following surgery and has had several seizures since (focal aware) along with changes in anti seizure meds etc.
After every seizure, my normally confident, resilient, outgoing, rational partner has experienced around 7-10 days of acute changes in his mental state before gradually returning to his "normal" self. During these periods he describes how he feels as unbearable. He has intrusive thoughts, does not like to be on his own due to a sensation he describes as fear (not of having a seizure), he is tearful, panicked and at times has felt paranoid/experienced auditory or visual hallucinations (though he is able to tell what's real and what is happening). Neuro-oncologist adamant that this is unrelated to tumour or treatment due to its location and advised we get a mental health assessment via the GP, who referred us to mental health services.
Psychiatrist met my partner in his usual state. Confirmed no evidence of undiagnosed mental health issue.
Epilepsy nurse great at helping with seizure meds but told us to speak to GP about the "acute anxiety" as they referred to it. GP told us to speak to epilepsy nurse, as did the Macmillan nurse specialist.
To us, to the correlation between the seizures ending and the very distinct - and isolated - mood disturbance is undeniable. My partner was absolutely stable and probably better than he has been for a long time in the weeks preceding his latest seizure this week. He has his last seizure type symptoms on Friday and since Saturday it's like one of the dementors from Harry Potter has visited.
Has anyone else experienced anything similar ? Despite our best efforts, we feel as though the healthcare team aren't really understanding what we are experiencing and my partner is becoming increasingly frustrated and hopeless. He says he would rather go through the brain surgery and radiation again in a heartbeat than feel the way he feels post seizure.
I have found a neurologist in London who specialises in brain tumours and epilepsy but I just don't understand why the team we are under don't seem to think that there is any cause and effect here.
Thanks for reading if you made it to the end and sending you all plenty of love.
Hi
a warm welcome to the online community. So sorry to hear about all that has been going on.
I supported my late husband through the 3 years of his Glioblastoma journey and at times we had issues with seizures, latterly focal seizures but not with epilepsy. It sounds as though you have exhausted the avenues immediately open to you so if it was me, I'd be going back to your partner's medical team as they should be the people best placed to know the situation. There's potentially no harm in asking for a second opinion or requesting that the case gets discussed at their department's MDT meeting.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
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.
For now I'm sending you a huge virtual hug and lots of positive vibes.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
