Does anyone else taste metal or change before having a seizure episode?

[drew32]

[ecossaise]

I'm not aware of my taste buds changing but I am pretty sure that I used to get a heightened sense of smell just before having a seizure - and even now that my seizures are under control, I have a much sharer sense of smell than I used to!!

[DaveC88 in reply to ecossaise]

I just had my first a few hours ago. I remember bits and pieces. Fucking weird, kind of like a movie flick. I have a metallic taste now and not to sure what's going on to be honest. Kinda out of it.

[monaco1]

I don't have it now, but I definitely remember that sort of thing when I was a teenager, I think I was on Epilim then, (sodium valproate), and whenever I had a seizure, it was as if I wanted to throw it up, from my stomach and throat, but nothing ever did come up; it was only during the time of the seizure, then it took me a couple of minutes to recover, and I always asked for water,. Now you say that it's like metal - yes! that is what it was like! I had that for years - till I changed meds!

[Toomuchsynchrony]

Hi there,

From what I understand experiencing certain tastes or smells is quite common among people with epilepsy where the seizures are affecting the part of the brain that is responsible for our experience of taste and smell.

The interesting thing is that the taste isn't occurring before the seizure, in this case it is often that the taste you experience is the result of the seizure activity in that part of the brain occurring before it spreads to the rest of the brain.

I once read a book which included a passage about a girl that experienced the a strong smell of jasmine (i think) just before she had a seizure. By accident she found that if she sniffed another very strong smell (i forget what it was) it stopped her seizure from occurring. Presumably by smelling that smell it interrupted the seizure activity occurring in her brain by introducing some normal activity to it.

Obviously I don't know the circumstances of your seizures but it were possible you could always give it a go (maybe carry some perfume with you, test different smells possibly) after all it wouldn't do any harm.

If you are interested the link to the book is here, amazon.co.uk/Epilepsy-Appro....

I would highly recommend it to anyone with epilepsy or carers for that matter. Unfortunately reading the book didn't help stop my seizures one bit. But it is very informative and almost entirely based on sound science.

[Toomuchsynchrony]

I just saw the price of a new version of the book £37!!!! I'm sure it was less than a tenner when I bought it some time ago.

[tigger1977]

Hi there.

I have auras (petite mal)or warnings I can taste whiskey (I dont drink) smell fire strange smell or taste that just isnt right. Baby powder etc. Or waves of nausea

or a sense of de ja vu excuse spelling.

I have temporal lobe epilepsy and over the years have been diagnosed with 5 types of seizures.

I have taken all different AEDS but bow on lamotrigine x

[huggs]

Hi Drew32,

I don't get a metal taste at all, but sometimes I see yellow ball things that become distorted, or have a sense of de javu . Mostly though I get very uptight about nothing and am very tense. Lots of times have no warnings at all. I am on lamotrigine and tegretol for my epilepsy. Temporal lobe, myoclonic jerks, petit-mal, grand mal and partial seizures is my lot. Take care, and sending you hugs xx

[DaveC88 in reply to huggs]

That's precisely how i felt. Just had my first one i fought it off for awhile then i dunno what happened. But that's exactly how i felt before i blacked out. No medical history at all aside knee surgery. Oh yeah, I'm starting to have a metallic taste like nuts Best of wishes & happy father's day

[happy48]

I always get a metal taste initially, warning me (known as an aura) that a seizure is developing.

[Judy818 in reply to happy48]

I do not have epilepsy but I do have MS and experience this sensation as well. I did tell my doctor but show no signs of epilepsy.

[Pepsidol]

Yes I used to taste metal before a seizure but I also smell gas and I was no where near any gas I don't know why but since I have been on my meds lamotrigine and phenytoin I have been a lot better cheers eric

[wul004]

Hi drew32 (if you still there?)..I have always had that 'metallic taste' also phantom smells!..Even ,especially in fact !, with what is classed as an Aura,(I call it Flashy lights!!),Usually last 10 / 15 minutes max! it then passes leaving me 'wondering' if a seizure is imminent??.