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Worried about my dads seizures

louise88f
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I need to first disclose that my dad has not had any diagnosis of any kind..so I hope it is ok to post this..

 

A few months ago he started having what looked like absent seizures every few weeks. These have progressed and he now has full seizures 2-3times a week - he is aware they may be coming on, has involutary movement of his arms and gasping of breath but remains concious/unaware. Afterwards he is dazed - not sure of what day/time it is or what he has been doing for the past few hours or so.. 

 

He has a telephone apt with a neuro triage nurse in a couple of days and hopefully will be referred for an MRI - but has been advised this could take up to 27 weeks (not sure if this will change depending on when he explains his situation). I am keen to send him to a private MRI scan because I can't wait around to see what is going on.Covid at the moment may mean services are more strained than usual. 

 

My reason for posting is because I am going out of my mind thinking the worst and the 'not-knowing' is awful. 

I wondered if anybody has had similar experinces and what the outcome/diagnosis was. I know I can't make any assumptions until he has had the relevant tests but I am just so worried and need to prepare myself for what may be to come. 

 

Aside from the fits he seems fine (he is a typical 'bloke' and refuses to admit that he is unwell) He says he is getting better but the fits are getting worse and I am so worried. I think if he had any other symptoms (headaches etc) he wouldn't admit it anyway.

 

Sorry for the long post. 

  • Hi louise88f,

    Welcome to Cancer Chat. I'm sorry to hear of the symptoms your dad is experiencing and I can imagine the uncertainty must be really difficult for you, especially if he may not always be admitting how he's feeling.

    Hopefully he'll be having the appointment soon and I hope that is helpful and leads to some answers even if there is a bit of a wait involved.

    If anyone here has any similar experience to share then hopefully they'll be along soon.

    I hope you find out more before too long. Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline

    Hi, im on here because my dad had essential thrombocytosis but I came across your post .

    I was diagnosed with epilepsy in 2017 after a tonic clonic seizure in my sleep since then I've had absence seizures and focal seizures ...all tests ive had mri ,ecg, eeg  brain etc have all came back clear "no seizure activity " to catch activity on a scan u need to be having a seizure at the time.  I was started on medication after my first seizure because my friend managed to record some of it .my next one was witnessed by paramedics ... my advice would be wear a fit bit and record anything you see ,the more proof you can provide to neurologist the better and quicker they can treat your dad. Good luck 

  • Offline in reply to Weelou1984

    Thank you for your reply.. since my original post he has been diagnosed and started medication for epilepsy last week, but we are still waiting for a scan (although they did say this wasn't urgent and from what you said it may not give us anymore information anyway unless it does show a tumour/lesion). Seizures have gotten worse but it's early days on the medication so fingers crossed. Thank you again I appreciate you reaching out. I hope you are keeping well. Best wishes x

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