Lamictal - Seizure?
Posted , 6 users are following.
Hey all so i was diagnosed with epilepsy at 8yrs old i am now 21 and last year i had some health issues which led me to change my medication from Epilim to Lamictal its been about 3 months now since i have fully swapped over to the new drug Lamictal or Lamotragine (same thing) and the other night when i was driving home i felt really sleepy and i wanted to close my eyes i thought maybe it was just the heater i had on so i turned it to cold to keep myself awake but when i got home i was sitting on my couch drinking some water and all of a sudden i got this massive head spin like really big and strong and i thought for sure i was going to have a fit but i kind of pulled my self back together and got up straight away and took my tablet. Since 8yrs old i have never known when my seizures were going to happen but now being on this new drug is it possible that maybe now i can tell when there going to happen ? i went straight to my GP the next day and he checked my blood pressure and checked my pulse and my eye reactions and he said they were ok so he sent me for some blood tests and i go back on Monday for the results but could this have been a seizure or do you think i was about to ? obviously like i said i have never known when they were going to happen although if i could i would imagine that would be what it felt like. Does anyone on here know when there going to have a seizure ? and what does it feel like ? any ideas or input would be much appreciated ! i really hope that this new drug works for me i would hate to have a fit now its been 6yrs!
0 likes, 71 replies
jane75220 amy71414
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amy71414 jane75220
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allen07303 amy71414
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Hi Amy,
i hope youRe feeling better🙂
You have been thru a lot hon.
keep strong!!
Allen
allen07303 amy71414
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Perhaps our moderator would explain to me what I said a month ago that was so offending it needed deleting??
if I've ever said anything to you Amy or anyone else on this post please accept my humblest apologies.....
Allen
mo-jas allen07303
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..erm ..think you'll find it was an 'amy' comment to you that was deleted, allen.
allen07303 mo-jas
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Oh that's my ever feeble mind at work mo....
I'll get it together one day😬
mo-jas amy71414
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ok.. hi amy
i'm the fella that's been hijacking your thread to say hello to old acquaintances (hi winnie) without so much as a 'by your leave' or even a hello to you! ..rude of me ..very rude.
anyway, by way of an apology i'll try and rip thru the whole 'what it feels like ahead of a seizure' number.
first, ignore anything i say cos it's just about me and mine. ..lol ..seriously tho, as has been said we're all individuals but there are nevertheless common patterns.
my first seizure 29 years ago. i chose not to let the hospital wreck my life at that time so i went unmedicated.
i always knew when i was going to have a bunch (i generally have clusters then a breather for a week or three).
first, maybe 2 or 3 days ahead i'd just 'know' something was in the offing.
perhaps an hour or so ahead of it i'd start tasting a metallic sensation - picture putting a battery on your tongue..
finally i'd have what i called my 30 second countdown ..i'd already begin feeling everything draining out of me and i'd have a crazy mix of sounds and images; always the same it would be the sight and sound of a fairground waltzer going full steam and (don't laugh) 2 figures i can only describe as waldorf and stadtler from the muppets up in a balcony box - i would be standing in a theatre - and above all i'd be trying to put my finger on something.
all of this would only take seconds and then it was 'talking's done; here you go' and my 'strings' would be cut. the beginnings were always to the sound and sensation (and heat) of a rocket lifting off in front of me. i'd also get a sound i couldn't put my finger on before the lights'd go out.
i say all that cos on the whole it allowed me to avoid too much damage or embarrassment but i say it in the past tense cos within a short time of turning myself in again at neuro (they were fascinated as to how i'd coped during my 16 year 'runner'
the meds they put me on stripped away all my warning signs. that led to a nasty period of broken and bruised bits from going out like a light and head diving into the furniture. 
..all that said, i've much to be lucky about - i have complex and partials so i don't have the terrors of tonic clonic to face ..plus (and i wish i'd sussed out how) i do seem to have been predicting my seizures more recently. i'd not remember but after a seizure friends'd tell me i'd said one was ahead a day or two ahead of it.
i think i may've noticed a music kinda thing going in there somewhere but i'd have to get back to you on that! ..haha
lastly, not one i've ever had but i was just reading that some people smell burning.
if sheer volume helps, i hope this has been of some help!
right then amy..
am i forgiven for nicking your thread? i do hope so.
good luck with all of it..
mo
mo-jas
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p.s. ..no idea how i did it, but if you scrub the smiley following the word 'runner' and stick a closing bracket in its place, it'll all make more sense.
(..well, when i say 'all' i can't speak for the rest of the message but that sentence will)..
Winnie143 mo-jas
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Just let us all be happy and I wont sing lol xxx
Love to All xxxxx
amy71414 mo-jas
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Winnie143 amy71414
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mo-jas amy71414
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you're more than welcome, amy.. (and hi to allen and winn too)
one other thought - there's also a 'deja vu' element ..bit difficult to describe, in fact i said 'no' when asked but as the appointment progressed they pointed out that what i described did indeed count as what they considered deja vu.
i don't know if that adds anything to the sum of human knowledge but it may just ring a bell with you.
hope so.
jane75220 mo-jas
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Please can you explain what you mean?
Winnie143 jane75220
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Question was for Mo but I do interfere lol
Win xxxx
mo-jas jane75220
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hello jane.. win's right in that literally it' translates as 'already seen'; a feeling of familiarity with an experience as it happens, like you've been there before.
curiously they had to tease it out of me cos i didn't see it as deja vu but as all the music and other crazy stuff kicked off i'd always be trying to put my finger on something but not be able to ..lord only knows what it was i would be struggling to nail but my neuro mob ticked it off as deja vu. ..handy warning if you get it!
mo-jas Winnie143
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..the more thoughts and input the better
jane75220 mo-jas
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DEJA VU I was asking the op what they experienced as a deja vu moment.
I have epilepsy and deja vu is one of the signs and symptoms. Hence the neurologist questioning the OP about it.
Take care
Winnie143 jane75220
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For Mo and Jane a Deja Vous song lol Hit it Win xxx
It seems we stood and talked like this, before
We looked at each other in the same way then
But I can't remember where or when
The clothes you're wearing are the clothes, you wore
The smile you are smiling you were smiling then
But I can't remember where or when
Some things that happened for the first time
Seem to be happenin' again....There ya go a song by Ella Fitzgerald and others about it all xxxx just kidding xxxx
Winnie143
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jane75220 Winnie143
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?Epileptologists refer to deja vu as a simple seizure. It can lead onto a complex partial seizure and may progress to a secondary generalised seizure.
Many tests are done to establish whereabouts in the brain the seizure is arising from. If a focus can be found the person is then thought to be suffering from focal epilepsy and surgery may be an option.
Deja vu is very unpleasant and does not just amount to a feeling of having been somewhere before or hearing the exact conversation as before despite knowing full well that that is an impossibility. Many people including myself have a feeling of oppression and terror that varies in severity.
Deja vu is not as the song you have posted implies an inability to recall/remeber events it is much more frightening and significant.
I am stressing this for the sake of anyone else who may be experiencing similar attacks because these should not be ignoredbut deseerve referral to a neurologist specialising in epilepsy.
Driving and deja vu.
?These attacks have to be reported to ones dr and the person if a driver has to immediately stop driving so you will see how important it is to seek mdical.neurological intervention irgently.
Take care
?xx
jane75220 Winnie143
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Only cure is surgery but unsuitable as szs coming fromother parts of the brain as well as th hippocampus.
My neurologist told me that I am not allowed to drive.
Winnie143 jane75220
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What a jerk I am lol xxx
mo-jas Winnie143
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jane75220 Winnie143
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Fortunately, touch wood, nothing like that has happened to me. Just deja vu, rising feeling in the stomach, pins and needles going into chest, mouth, lips burning for approx 30 secs then latterly an electric shock sensation going down the right hand side of my body to the great toe . Crying out sometimes screaming in terror. Accused of being disruptive by nice caring A and E staff who did not know anything about the 38 different types of epilepsy and even more number of seizure types that are still being classified by the ILAE.
Never mind.
Winnie143 jane75220
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Sorry if the song offended you but I manage my fear with singing and being happy. I shout out to my Mum for help and she passed away in 1976. We all know what the fear of having a seizure is like. Terrifying xx
Regards
Win
I cannot change so if I offend anyone, it is just my way of coping and it helps me, so any requests anyone lol
jane75220 Winnie143
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Winnie
You have not offended me. It is my fault.
I did not realise that you have epilepsy so I jumped in too quickly. I am very sorry. You have not offended me I just wanted to spell out the way these attacks of deja vu affect us nd how they differ from the ordinary sense of having been or heard somewhereetc. I am sorry.
These seizures are so traumatic and I am fed up with them as I have daily attacks.
Winnie143 amy71414
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Hope all is well in Australia and with you xx Keep in touch and let us now how you are keeping xx
Love
Win xxxx
Winnie143 jane75220
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My humour often gets me in trouble. They are scary things to have and just to talk about it to others is a relief in itself. We need to be able to express how we feel so no need to worry I am one thick skinned person lol I come from a Family of 10 and they all sung and harmonised so when on a downer I turn to my wit, which has got me into enough trouble xxx Keep well Jane xx
mo-jas jane75220
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hi jane
..as you probably gathered we're 'old hands' at this (although allen would probably agree that compared to winn we're still kids in shorts in the epilepsy playground department)..
most interested in what you have to say; i think you've hit several nails on the head. one thing that i always feel behind the curve on is just which particular classification model is current - they do seem to change it wholesale but of course, some clinics and consultants are even further behid than me and hang on to the 'old' terminology! to make matters worse we are all so irritatingly individual in our presentations and experiences; just how these poor consultants cope with us.. i mean, couldn't we all just be a bit more cooperative and be the same??? ..hahaha!
surgery - lucky if one's a suitable candidate ..my damage is across front 3 r/s lobes + atrophied hippocampus so it was never an option for me. i do hear it can utterly transform lives for those involved, which in a way can give all of us a little hope. they're fixing theirs today may just mean they'll be fixing ours tomorrow. ..yeeeeha!
you say "many people including myself have a feeling of oppression and terror that varies in severity".. that gets an 'ouch' cos even you putting that there puts me in mind of it - it's so strong that i'm physically tensing and squirming now just from remembering it - i'd characterise it as an utterly overwhelming sense of end-of-earth scale dread; being at the wrong end of an unimaginably all-encompassing force.. (not unlike when the car that ploughed into me 'bulldozed' me down the road) ..lol - the difference being that recalling the accident no longer leaves me leaping out the chair in shock!! ..that kind of oppression and terror?
i'm told my last words after 'here we go' are usually along the lines of 'oh #@$************* as i kinda deflate and go down. a surrender, of sorts.
as for driving - gone in an instant when they confirmed it - tragic for a petrolhead like me, to say the least.. the cars went but i did hang on to one of the motorcycles just on the offchance.. although it shocked me the number of people with clear signs who think it's ok to carry on regardless - tbh i was one of them, tho more out of ignorance than intent.
and finally jane ..what is an 'op' please? ..beats me! i know 'op' as 'operation' but i get the feeling that isn't what you're referring to.
happy week and bye for now, y'all
jane75220 mo-jas
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Op -other person.
.
I agree with your comments.
A famous neurologist asked me to describe the seizures. I explained about the deja vu, terror etc then stopped. He asked me to continue. I said I am scared in case it brings on an attack and also scared if I do you may cart me away thinking I am crazy.
He very gently said that he needed to know everything.
I explained it this way.
I feel so terrorised that if masonry came toppling down on me that I would not be surprised, I feel sick with terror, my stomach turns over at the thought and then during these attacks the fear, understatement, increases to such a severity Istart screaming, Help me, please help me I am dying.
He said'does it feel as if the world is ending?'
?I said YES exactly that.
He said you are not mad or crazy what you have just told me is what other peoplewith epilepsy have said to me and is typical lof a person with a lesion in the temporal lobe.
My neurologists are the only ones who believe me and understand.
I hate this epilepsy it is torture with daily seizures.
mo-jas jane75220
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oh jane, jane, jane.. my heart goes out to you -
granted i should have been dead but given i wasn't not a day goes past that i don't thank whatever powers are out there that i wasn't left with tonic clonic too - ours are bad enough (chatting with the nurse while waiting to see 'God'* last month my very words were 'i'm weary of them'
but that's where you and i depart ..i have it sooooooooo easy compared to what you're having to tackle.
it's funny your chap said to tell him all.. my lot did that explaining that so many of the indicators simply can't be picked up for all of the scanners and electro wotsits in china! plus they helped me tell my story - they didn't lead me but they spotted stuff i hadn't even noticed. i'd be gutted if you'd said he brushed you off (disappointed, but then we've all come across ones like that along the way) and was able to reassure you that you weren't in a unique madhouse of one!
same happened the day i received my diagnosis from on high.. 'naming of the beast' day. it's still a beast but boy, it was good, even empowering to put a name to it, i felt. hope you did too.
on the end of the world thing ..i can't imagine how terrifying it must be when you feel it's coming right at you - mine is much more detached that that; i know it's the end of the world but i'm a witness, not a participant.. it's very much 'omg.. what have you done???' - i know it's a rocket thing ..i mentioned that above ..but what i didn't say is that i know it's only one of thousands and they are heralding the end of everything. thing is, it's 'omg.. what have you done ..to them???'
and the rest? i've been doing it long enough to just get on with them, i don't have to face them daily and they certainly don't involve being terrified witless by them - how can i not feel lucky?
finally, you say 'my neurologists are the only ones who believe me and understand'.. i do hope you'll have clocked there's a bunch right here you can add to that select list! ..haha
..plus it's self-service so you don't need an appointment. bonus!
sorry if you've already said but for how long have you been dancing in the devil's carpark? did an a.b.i. kick it all off or are there other causes?
as has been said this is a good place to vent ..it strikes me it's a good sounding board (or echo chamber??) but more than that it offers so many 'ooooooh yeah' moments of recognition - you did it when you mentioned 'lips'! dunno why but it is reassuring.
last thing i should probably mention ..you do know that folk with trashed r/s temporal lobes can tend to run on a bit? ..really?? ..naaaaaaaaah - surely not??? ..lol
mo-jas
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*'God' being the neuro consultant, of course ..lol