Epilepsy

[pinkstarbinks]

Hey guys, so our middle guy has epilepsy two doc says, due to them watching more than one funny turn on video footage. He has had a crummy month poorly with various other bits and bobs, with plenty of funny turns of differing kinds. We had noted what triggered them and it was something to do with shop lights, being in the car, walking outside, being tired or Ill and television. These have stopped, can I ask does this happen in the sense of a trigger not triggering? Tv would trigger but now he's getting better it seems to just make him blink lots. You can see slight signs in his hands etc but it seems to be a real improvement for him. Is he more sensitive to his triggers when poorly and not sensitive when on the mend? He is going to have a mri, eeg & see the epilepsy team but in the meantime i wanted to ask you guys

 

[blakesmummy09]

Hun it's sounds like photosensitive epilepsy. I have it myself, the sunlight through the trees etc can flicker and so do TVs but he will notice it. I myself have seizures more when ill or stressed too which doesn't help. If you've got any other questions about it I'll be happy to answer them. I was diagnosed at 10 and I'm now 27 x

 

[pinkstarbinks]

Hey, thankyou for your reply. Sorry to hear that How do you feel before (can you tell somethings coming and how long before?) and afterwards? Does your behaviour change? Have you managed to control it? are you able to comfortably be around sunlight? Sorry for all the questions Thankyou in advance

 

[blakesmummy09]

Honestly it's fine it's lovely to be able to rest your mind I can only imagine how hard it must be for you.
Before a seizure I have what's called an aura mine personally is like the coloured blob in front of your eyes when looking at the sun but it will be a picture of the last thing I looked at but in the sun blob format if it makes sense. It floats in front of my eyes about 30 seconds before a seizure which gives me time to get to a safe place but as I got older I found laying in the recovery position and breathing slow and calmly sometimes stopped it before the seizure could start so I think working myself up about it made the electrodes worse and triggered the seizure as such.

As a child I was on two different types of medication and never had seizures on them but took myself off when I fell pregnant with my ds as I was informed it wouldn't effect my pill which was false information so I didn't trust it with being pregnant after that.

Now sunlight is fine but through the trees etc still worries me but I've learnt to just use my hand to cover my eyes if it's bad but now I'm starting to drive I have sunglasses to dull the brightness. It's all about the flickers per second that effect it.

Also I haven't had a seizure for nearly 10 years now and apart from I can't go to nightclubs with strobe lights and certain films I have to be careful with I'm now learning to drive and have two children that aren't showing any signs of it yet (eldest is 6).

Don't get me wrong it might be completely different for your ds with auras etc but although it's difficult at the start it's something you adapt to you and learn to live with as such.

I'm here if you want to chat x