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Standalone 'Auras' - shared experiences?

Hiya, 

Background info: I was diagnosed with epilepsy 10 years ago, and it was successfully controlled my Lamotrigine (i.e. no seizures) up until a few months ago. I have since needed to increase my dose as I suffered several grand mal seizures whilst out and about. 

Something else I continue to get intermittently is what I am guessing are 'Auras' that do not lead to an actual fit.

As this is new for me I was interested in what other people's experiences are of them, as I haven't found anything very relatable when looking online so far...

For me, my heart rate increases and the outside world fades a little in to the background - although I am still capable of walking.

 

It consists of this intense, strange thought-path - that I find impossible to remember afterwards but feels familiar when I'm experiencing it - and a general sense of foreboding. I also feel like I could be making some vocal noise but I can't be sure. 

Apologies for the ramble but it would be great to hear from anyone who has the faintest idea what I mean... 

Cheers

Viv

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  • LadsWorth Veezavee

    I feel you there, I experience something very similar. I get a sense of De ja vu then all a sudden I have the same experience apart from the fact that every person I can hear still just repeats words from inside my head (depending on what I've been thinking about).

    I've always referred to these as side effects due to my medication for epilepsy (keppra) but I'm not sure.

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  • john2414 Veezavee

    Hi

    The experiences that you are discussing seem very similar to mine.

    At present I am on 400mg Lamotrogine daily. 200 mg morning and night.

    I was initially diagnosed 175 mg (350 mg a day) but gradually the effect seemed to become not as pronounced and my GP upped my does to 400 mg a day.

    This had initially worked fine but it has started to 'wear off' in its effect - my epilepsy episode are diagnosed as nocturnal Tonic/Colonic who have occurs after a several car accident in 2015.

    There has no indication of epilepsy in either side of my family.

    After my initial seizures, my diagnosis of being epileptic I have never again experienced a full 'episode'.

    But in the past 6 months I have had the experience of the precursor of a seizure (nocturnal) every 2 -4 weeks which has never progressed to a full episode which up to now has only ever been nocturnal (always between 2am to 3am) for some reason

    I have never actually seen this but my partner has (luckily) been there and could tell me exactly what happens.

    But now these seem to be starting to occur during the day. It never progresses to a full seizure - more like you say an 'aura' and it does not lead to a full fit.

    Yesterday for the first time I had dozed off in the afternoon for about an hour and when I woke I was disorientated, unable to process my general thoughts. Even though I could think of what I wanted to say I could not process this into a verbal sentence.

    My partner sent me a text message which even though I could read it I could not actually process the information. It took me several hours to be able to actually make sense of the text. In essence I know what I wanted to say but could not form the words.

    But to sum up my rambling - this is becoming of concern to me. I seem to have a feeling/sense of foreboding similar to what you are talking about.

    Again like you I thought maybe it is just me- but as I say I read about some people who have been seizure free for years and I seem to having these episodes, again only nocturnally, every 2- 4 weeks

    I stick to my 8am/8pm rigorously. I eat regular meals. Always have a breakfast before leaving the house. I do not drink or smoke.

    I have heard and read about the horrors of changing medication hence I am reluctant to go down that line but I am starting to feel the lamotrigene is not working as it should.

    Sorry to go on but does this sound similar to your experiences.

    Regards

    John

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  • stephanie82533 Veezavee

    This sounds exactly like my 'funny turns' too. I've tried lamotragine as well as prob 10 other meds but all stop working when my body gets used to them.

    I start off feeling sick in my tummy with it coming in waves all over, I know what people are going to say before they say it or what I'm going to read before I get to it in the book. My heart races then I either can't speak or it's all a jumble coming out. Probably only lasts few mins but takes good half an hour to get over it. I usually get about 10 to 12 of these over 2 or 3 days every month, I think linked to hormones! Also tiredness and stress sets me off.

    You're not going mad, I understand completely what you mean!!!

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