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.
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salamander160
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I've had epilepsy for over fifty years, I was on lamotrigine [lamictal] always with another epileptic medication, but in the process of changing while on lamotrigine I would get "night terrors" in the process of getting to sleep, subconsciousness, like an electric shock to the system, sometimes throwing myself out of bed! I am now on Vimpat and Briviact for Juvenile Myoclonic Epilepsy.
Would be interested on any side effects of Lamotrigine, have been on that since start of this year. And in respect to bright lights ?
Other than maintaining control of lights in your home & dark glasses, perhaps it's be worth trying an additional AED in addition to Lamotrigine. Whilst not a lover of medication, I moved onto a small dose of Brivaracetam in addition to Lamotrigine, 3-4 months back and has proved very effective. NHS locally a joke, thus when yet again they'd messed up supply of AED, NO Brivaracetam, with 36 Hr's intense background confusion, could actually feel full comprehension returning within minutes of taking a Brivaracetam pill (Nb. NHS had ensured delivery of Brivaracetam 8 days after I'd started to raise the matter, I'd eventually called 111 4 days prior to running out, as didn't want an emergency ambulance crews time being wasted). As ever, NHS proved a joke, now have it on my medical record "XXX has mislaid his medication and/or failed to take prescribed medication.
And Focal Seizures ? Initial 3 years, I'd rarely be more than a few minutes of absolute confusion. Past 3 yr's, have advanced so that effectively being effectively blacked out for 12-18 Hr's is the norm when a szr happens, not unusual to have vague awareness going into an ambulance 1pm one day, coming around 11am in hospital the next.
I don't know about side affects from lamotrigine but I deffinitely have side effects from epilepsy meds and other ones too, for me it is the weight gain which concerns me the most, it really worries me getting too heavy, fluid retention, etc. I take gabapentin for my amputation, it helps the nerve pain but is also used for epilepsy. I am waiting for paramedics, 111 is concerned because the aura is lasting a long time, over 4 hours this time, the meds I am taking are probably masking something. The fact that I already have a brain injury makes it easier to understand what is going on but it is still scary not actually knowing what is actually going on.
Not normally online all morning, but....hope it works out. Happy you had sense to call 111, worth doing if it seems an issue (Nb. Have called them twice myself, couldn't breath properly, 3.5Hrs after 50% increase).
Understand the weight gain, fluid retention issue, it's horrific. Was on Lacosamide, after 50% increase January '23. @52yr's athletic type individual, waist line expanded by 7-8" in 3.5 Hr's, has never dropped since. Same with Lamotrigine, 36 Hr's to flabby cheeks, 2nd chin, male breasts apparent, few weeks to a triple chin. As AN Other who's always been athletic ? It's demotivating
Dr's ? Oh no, can't be doing anything to do with med's......really, am from science based background, an individual doesn't take a 50% increase of a chemical and finds waist expands by 7-8" in 3.5 Hr's and difficulties breathing as lungs physically obstructed, without there being a connection
I lost my epilepsy neurologist in 2013, I was on Epilim and Lamotrigine from circa 2009 -2016, I was getting severe shakes in my hands, tested for Parkinsons Disease, negative, but meanwhile had been noted that long term use of Lamotrigine had rotted my teeth, teeth actually falling out, eventually taken off the Lamotrigine in 2018, [Fycompa and Lamotrigine 2016-2017] my teeth considerably improved👍 No significant reaction with light, just the night terrors when trying to sleep, could be over an hour trying to get back to sleep again, I believe brain just said you've had your warning for today?
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