Neurological conditions
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Epilepsy, would anyone mind telling me how it feels to have a fit?

CressCress Member Posts: 184 Pioneering
My son was born with a rare neuro cutaneous syndrome which left him with bi lateral  malformation of the face, moderate to severe learning difficulties and epilepsy.

When he was born I remember trying to convince medical staff that the noises and jerking movements were not wind.. took a couple of days to get someone to actually see it for what it was.

He was put on meds and we brought him home, only for him to start having a different type of fit, infantile spasms,  this time trying to convince a health visitor that no, it wasn't wind...she smiled and told me how first time mums are always worrying.
Sod that, I thought and the video camera that I'd thought was a ridiculous waste of money  (it was 1982 so they cost a hell of a lot back then!) turned out not to be after all...we were able to show the consultant paediatrician exactly what was happening and he was put on new meds and had various tests.
He was epileptic, not windy, and has had different types of fits over the years, never achieving full control.

Having watched him have so many fits over the years its frustrated me that I dont know what he's going through, what he endures, apart from it obviously distressing him.

Is there anyone here who has epilepsy and wouldn't mind sharing their experience of what having a fit is like for them?

Appreciate any insight...

Replies

  • woodbinewoodbine Member Posts: 1,365 Disability Gamechanger
    I have epilepsy but I couldn't even start to tell you what happens, I know how bad I feel afterwards there are many types of epilepsy I have absences which last around a minute and full blown seizures which if they last over 5 minutes my wife has to administer a rescue drug into my mouth which will bring me round after a couple of minutes. Epilepsy action is a great place to go for information and help
    https://www.epilepsy.org.uk
  • CressCress Member Posts: 184 Pioneering
    Thanks @woodbine...interesting you mention the rescue drug by mouth.
    My sons latest GP tells me they have no knowledge of this, unbelievable,  I know!
    Only ever been given Rectal Diazapam for emergency treatment...
    Given that he's a good three stone or more heavier than me and might as well be thirty stone heavier when unconscious i found it impossible to turn him over to administer it...
    Thankfully the more severe grand mal dont happen very often ...
    Strange that whenever I've asked about rescue meds by mouth I get nowhere...

    Thanks again for taking the time...
  • Francis_theythemFrancis_theythem Member Posts: 78 Courageous
    Hi I have absence epilepsy, but I've never had full body seizures. I black out, from the outside it just looks like I'm standing staring into space. I've had times where I've fallen over/my legs gave because of it, other times (more often these days) I jerk a lot. Particularly my arms. With that sometimes I drop things, or spill things. Once I came to and I was on the ground and tomato soup was everywhere. I don't know what the twitching is, because it's not a sign of absence epilepsy so I think it's a different form. Regardless, my meds help.
    It's very disorientating for me and I feel weak and shaky afterwards, but everyone is different. I actually feel like that for the rest of the day and it messes everything up. 
    I second epilepsy action and also epilepsy society but their website doesn't seem to be functioning at the moment.
    It doesn't distress me emotionally, but maybe that's because I don't have grand mal. Aside from the twitching, I'm blacked out so its only the after-symptoms that are really bothersome for me. And the twitches ><
  • CressCress Member Posts: 184 Pioneering
    Thank you @Francis_theythem
    For taking the time to reply.

    My son has the Grand Mal, absences, and Temporal Lobe and they wipe him out too.
    He's also always very hungry afterwards. 
    We always have what we call " fitty food" mini pork pies or scotch eggs, cold meat for a sandwich, In the fridge as he just wants to eat straight after.
    It's as he's got older that he tends to get more distressed afterwards...especially the Temporal Lobe ones, where he's experiencing a very unpleasant aura for a while before it stops or goes into the Grand Mal part.

    Thanks again.
  • woodbinewoodbine Member Posts: 1,365 Disability Gamechanger
    Cress said:
    Thanks @woodbine...interesting you mention the rescue drug by mouth.
    My sons latest GP tells me they have no knowledge of this, unbelievable,  I know!
    Only ever been given Rectal Diazapam for emergency treatment...
    Given that he's a good three stone or more heavier than me and might as well be thirty stone heavier when unconscious i found it impossible to turn him over to administer it...
    Thankfully the more severe grand mal dont happen very often ...
    Strange that whenever I've asked about rescue meds by mouth I get nowhere...

    Thanks again for taking the time...
    its called "midazalam" (sp?) its goes into the "bucal" cavity which is between the gums and the teeth
    hope that helps, my gp's had never heard of it either it was recommended by the epilepsy nurse i used to see. According to my wife its much easier than the rectal stuff.
  • CressCress Member Posts: 184 Pioneering
    Thanks for that @woodbine...
    I'll ask again at his Doctors..  :/
  • CressCress Member Posts: 184 Pioneering
    Sorry, meant to put :)...lol
  • Tori_ScopeTori_Scope Administrator Posts: 1,277 Pioneering
    Let us know how you get on @Cress!
    Online Community Coordinator

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