seizures and bright lights

[salamander160]

Hi, I had encephalitis in 1975, I have had epilepsy since then although my seizures are controlled. I last had a full seizure in 1997. I am on Lamotrigine and take gabapentin for an injury on my left foot, the nerve pain. I was taking tegretol and Keppra until about 5 years ago when they changed me to Lamotrigine.

I have been experiencing some strange symptoms, I didn't realise that they were focal seizures, but it now makes sense. I am trying to find out more about them.

I go into some very deep sleeps and my carers cannot wake me up, it is like I am unconscious, I do not hear anything, the fire service have given me a vibrating smoke alarm but I doubt I'd hear that either, I cannot hear anything, when I do wake up, I am very groggy, confused and my speech can be slurred. According to my Mother, I have been having these deep sleeps for a long time but didn't recognise them for what they were.

I can be sitting in my kitchen, drinking a cup of tea, listening to my audio books, all of a sudden I drop off, get the sensation like I am going to fall out of my wheelchair and suddenly wake up again, i could lose a few minutes or even longer, I am concerned about these episodes because of the risk of falling out of my chair completely.I didn't associate them with my brain injury, just thought they were because I am tired and don't sleep.

For the last few years, I have noticed that I am becoming more light sensative, right now, I am sitting in the dark, no lights on but the light in my head is very bright. I have seen opticians, ophthalmologists, they said it is nothing to do with my visual impairment, I had a check up this year. I was told by one consultant a few years ago that I have cataract but that is not significant according to my latest ophthalmologist. I saw my neurologist in the early part of this year, she said I am experiencing migraine lights, but she didn't follow it up. I am noticing I am experiencing more and more of these episodes and this is the second one this week. They can last a couple of hours. I googled them on Wednesday, I found out that they are focal seizures, are all these symptoms related? How can I stop the bright lights? If I go out of my front door and into the corridor, I live in a supported living facility, if a bright light flickers on, it can really hurt. Also really bright sun light can hurt too. I have been given the darkest glasses available, 99 percent, they do help.

My neurologist requested an mri scan on my brain and spinal cord which was done in June, I am waiting for the results, I haven't had an e.e.g. since 1998, 26 years ago, I have requested one but don't know how long that'll be before it happens.

Is there anything I can do to prevent the bright lights in my head? I am not too worried about them, I just can't sleep and have to try and relax and just read quietly until I drop off. I know all of this is because of my brain injury and realise things will change.

[Cinderella18]

Hi Salamander160. I’m very sorry to hear all the struggles you’ve experienced, especially the current situation with the lights ‘in your head’, as it were. I have no answers but strongly hope that there will be some advice posted on here for you. If nothing else, can you press (via GP or directly?) for a more urgent appointment with the neurologist? This is greatly affecting your day to day life. Best wishes to you.