Anyone with Gustatory auras accompanying olfactory ones?

[k2s4ever]

Well-this is a new perspective, but in my aura issue, I have always focused on the unpleasant olfactory burn smell as my primary aura, but never really included that I always have gustatory auras that go hand in hand with it, and that in fact, is the gustatory aura the primary aura, with smell the effect with it? (I admit, I got an online opinion about this from a neurologist who I did clarify I was under treatment. This doc said my symptoms and EEG seem consistent with E, and my own neurologist did think simple partial seizures initially too)
How many people who have olfactory auras ALSO have their taste affected?
In my case, the taste is an awful burn one too, just like the smell. It affects food and drink for me, depending on the item. Like coffee for example tastes like it was burnt on the pot; chocolate tastes funny and burnt; other food has minor effects, but still there, though I can manage around them.
Once I get the aura, the effect lasts for hours and I have struggled to make sense of this as it just seemed too long to be simple partial seizures, however, one blurb I read about gustatory seizures did make mention that after the initial seizure, the altered taste could persist for hours and that in gustatory auras, the smell often gets affected.
In my case, as I also have migraine type symptoms at time, this has been the challenge-are these auras migraine or E or both. Unfortunately, this new perspective is making me back to thinking that it is E, simple partials, and that yeah, I probably also have a migraine component too. My neurologist for the record has mentioned sending me to an E center for another view. My feeling is that if I can just get on the right medication combination that suppresses the auras, that's all I care about, and I will ask him to just please keep trying anti-epileptic drugs. I'm newly on Lamictil. That's the next one in the bunch. I don't need to see another doc if I have enough of an idea and can talk to my own doc about it.

[mel239]

In addition to missing time and hearing 2 men argue i had a constant sewer smell.With meds,these eventually resolved to just minor visual hallucinations and smells of sewer invading my brain are gone.however,alot of times and for hours I will smell urine-it is truly a funny sight to see my sniffing and crawling along the floor.When it gets real bad,I cant help myself but I open bottles of lysol and literally dump them on carpet and floors and cushions.But along with this,other things dont smell or taste like they should.Not always bad,just unexpected and clearly not correct.

[k2s4ever]

Thanks mel239!
So it sounds like you are also describing simple partial seizures. does your doc specify olfactory as primary? sounds like you do have taste affected.
I sure do-they're identical and go in complete company with each other. Always together, always a burn smell or something unpleasant along that line-like burnt wires/burnt popcorn/ramen soup seasoning packet gone wild.

[elizzza811]

I get a funny chemical or metallic taste in my mouth just prior to a seizure. I notice my tongue is often white when this happens, too.

Also, since developing seizures, my teeth stain heavily within days of a cleaning...a brown or grey stain that does not brush off, even when I religiously brush after every meal. Biotene mouthwash (for dry mouth) has helped to reduce the staining some, but not altogether.

[mel239]

my chart says gustatory but I dont think I am listened to most of the time.Ive seen 4 or 5 diff people and one sends me back to work and one tells me no factory work and one says my seizures are completely controlled and one fills out papers for medical retirement which I get turned down for and soc sec which i get turned down for LOL know I know why...they are talking to the wrong person in the office!!

[Endless]

Hey, K2,

Are you on Topamax? Nothing tasted right for me when I was on that stuff. Most things tasted metallic.

I have another neurological disease, IIH (high CSF pressure), and when it gets really bad nothing smells right. Car exhaust smells like chlorine, my dog smells like flowers, baking food smells like mud. My sense of smell stays that way until my pressure fluxuates down some. I imagine brain damage of some sort could also cause this problem, in addition to IIH.

With a smell seizure, I smell something bad that isn't there and it only lasts a few minutes at most. My IIH-related smell problems are me smelling something that is really there, but I smell it wrong, and this can stay with me for days or weeks.

[k2s4ever]

my chart says gustatory but I dont think I am listened to most of the time.Ive seen 4 or 5 diff people and one sends me back to work and one tells me no factory work and one says my seizures are completely controlled and one fills out papers for medical retirement which I get turned down for and soc sec which i get turned down for LOL know I know why...they are talking to the wrong person in the office!!

Gustatory has never been focused on with me either, and now if I can find information on whether such auras can also be seen in migraine. But at this point, I just am wondering to myself, give it up, it's E and maybe a migraine too, or who knows-maybe the vague headache is from the E.

[k2s4ever]

Hey, K2,

Are you on Topamax? Nothing tasted right for me when I was on that stuff. Most things tasted metallic.

I have another neurological disease, IIH (high CSF pressure), and when it gets really bad nothing smells right. Car exhaust smells like chlorine, my dog smells like flowers, baking food smells like mud. My sense of smell stays that way until my pressure fluxuates down some. I imagine brain damage of some sort could also cause this problem, in addition to IIH.

With a smell seizure, I smell something bad that isn't there and it only lasts a few minutes at most. My IIH-related smell problems are me smelling something that is really there, but I smell it wrong, and this can stay with me for days or weeks.

I was on Topamax for 4 months, but the burn taste I get has been all along. I had maybe very vague taste differences, but my taste problem with the aura long pre-dated, has been the symptom right in concert with the smell. Topamax was discontinued due to wicked facial twitch side effects. Lamictil is the new one along with the Keppra I'm on. Topamax didn't get rid of the aura. Keppra alone did nothing. Keppra with Depakote ER significantly reduced the number and Topamax kept them reduced to about 8/month at worst, (compared to 15-20 and sometimes more). Bottom line-nothing has eliminated them, so I just hope Lamictil can be the magic bullet. I'm on the starter dose of 50mg daily which is for safety due to the rash risk. It's only been three days, so too early to tell any side effects, but on this dose, I'm fine.

[k2s4ever]

I get a funny chemical or metallic taste in my mouth just prior to a seizure. I notice my tongue is often white when this happens, too.

Also, since developing seizures, my teeth stain heavily within days of a cleaning...a brown or grey stain that does not brush off, even when I religiously brush after every meal. Biotene mouthwash (for dry mouth) has helped to reduce the staining some, but not altogether.

Hmmm-will have to look at my tongue!
Once, and only once, did I get a faint burn taste by itself, and then a couple hours later, the full effect, smell and taste.