partial seizures - phantom odors

[MAB]

I has always felt like many of my partial seizures were brought on by being exposed to odors I find unpleasant. Has anyone else experienced something like this, seizures caused by strong odors?

 

[clusterhead]

For me, strong odors are definitely a trigger. Over the years I have learned to identify and avoid certain smells, like leather, bleach, naphthalene, hair spray, insecticides, even the smell of barbecue. My friends and family know, so they make sure I won’t be exposed to such odors.

However, sometimes it’s not always clear if the scent triggers the seizure or it’s the aura / beginning of the seizure that makes even the slightest smell unbearably strong and unpleasant. For instance, I’m in a room where nothing bothers me for a while, but suddenly sounds (e.g. running tap water) and odors I hadn’t noticed before seem so intense I think my head will explode; then, in seconds, I’m on the ground unconscious. They are never phantom though…

 

[MAB]

Thankfully my seizures have never progressed beyond simple partial seizures but they have been status many, many times but only once since I have been on medication for them.

Occasionally noise really, really bothers me, I will even notice the clock ticking but I never associated it with seizures

 

[MIKEJ]

Hello,

I have had many tc seizures in the past 10 years but prior to that I can remember having partial seizures all my life. Odors are a strong trigger and certain odors im scared are going to cause a seizure. For instance I cant get near a subway that is one of the strongest odors that scare me and make me think im about to have a partial

 

[MAB]

Thank you clusterhead and MikeJ for confirming what I have believed for awhile now. I'm an apartment manager and I had going into peoples apartments because some of them smell like cigarettes or too many air fresheners, etc.

 

[qtowngirl]

For me, strong odors are definitely a trigger. Over the years I have learned to identify and avoid certain smells, like leather, bleach, naphthalene, hair spray, insecticides, even the smell of barbecue. My friends and family know, so they make sure I won’t be exposed to such odors.

However, sometimes it’s not always clear if the scent triggers the seizure or it’s the aura / beginning of the seizure that makes even the slightest smell unbearably strong and unpleasant. For instance, I’m in a room where nothing bothers me for a while, but suddenly sounds (e.g. running tap water) and odors I hadn’t noticed before seem so intense I think my head will explode; then, in seconds, I’m on the ground unconscious. They are never phantom though…

not always clear is so true. the brain is so vast it's impossible to ever fully understand what's happening and why. research is key tho to learning as much as you can, nobody helps us as much as we 'can' help ourselves.

I've been referred to as the 'simple partial queen' (cute, but unfortunate as to why)... so here's a link that explains the four types of simple partials. my first question to you is if you investigate those odors, ie: checking wherever you need to check to see if the odors actually exist. if you do, and they don't, that is a sensory simple partial. also if sound gets distorted, as you say it goes from unnoticeable to intensely loud out of nowhere, is also sensory.
one good way to check is ask who you're with 'did that just get really loud or can you even hear it or...?' what those without epilepsy do/don't experience at the same time is a good baseline for sensory seizures.
more often than not these types of experiences (noise, smell), are a seizure that's already started to take place.

just for fun tho, noise and smell causing the seizure also happens. geez epilepsy is fun! :bigmouth: not.

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

 

[clusterhead]

Thank you, qtowngirl, for all the information. You are the first ‘simple partial queen’ I get to talk to! And I agree, nobody helps us as much as we 'can' help ourselves.

Yes, I investigate if the odors really exist; and they always do, but usually others don’t find them so annoying. As for my seizures, I think the proper term to use in English is tonic clonic. I lose consciousness, although when I am on medication the convulsions are less strong.

For noises and odors, I’d say there are 3 categories for me:
1) Odors and noises that in 70% of cases will trigger a seizure (being in a store with leather clothes or near a car alarm for more than 2 minutes). I have a whole list of things my doctor suggests that I avoid completely, this means I carry my earplugs wherever I go, it’s never me to clean the bathroom floor (yay!) etc.
2) Odors and noises that go “from unnoticeable to intensely” strong, exactly as you said, for some seconds before everything goes dark. For example a bowl of soup starts smelling terrible, but it was ok before, or, if I have the windows open, I can smell the garbage down the street. Smells that were there before, but either not unpleasant or far away or unnoticeable. For a few moments I have the ears and nose of a superhero! I don’t know if this is called a sensory seizure / partial seizure if it is followed by loss of consciousness and the rest.
3) The grey area: after every new seizure I have to discuss with the doctor whatever I and others can remember in order to see if there is a new item (odor or noise) to add in the triggers list or if my freaking out about them was the first stage of a seizure that had already begun.

I hope I was more specific this time.
Also, MAB and MIKEJ, sharing with you makes me feel less lonely and weird, so thank you too.

 

[MAB]

Thank you clusterhead and MikeJ for confirming what I have believed for awhile now. I'm an apartment manager and I had going into peoples apartments because some of them smell like cigarettes or too many air fresheners, etc.

Had should say hate, it changes the whole meaning of what I wrote. I hate (not had) to go into stinky apartments.

 

[giveasmile]

If light and noise already feel too bright/loud, a strong smell-- especially strong perfume or garlic will trigger a seizure

 

[qtowngirl]

I don’t know if this is called a sensory seizure / partial seizure if it is followed by loss of consciousness and the rest.

if odor and noise changes are taking place right before your tonic clonic it is safe to say they are (what is also referred to as a warning), a simple partial seizure (sensory is one of four types of s.p's, link on that info is in my last post).
when a t.c. follows a partial it is then referred to as a 'secondary generalized seizure' rather than a tonic clonic on its own.

talk with your doc more about it but my educated guess is for your convulsions that have the odor/noise changes prior you are fully experiencing a 'secondary generalized seizure with sensory simple partial.'

 

[Janellie8]

Not odors.. But more like temperature if that makes sense. Like when I get into the shower that feeling of the water when it first touches onto my dry skin sometimes triggers one for me

 

[Tez_20]

I has always felt like many of my partial seizures were brought on by being exposed to odors I find unpleasant. Has anyone else experienced something like this, seizures caused by strong odors?

This is one thing I've never suffered from odors causing a seizure but feeling sick bad with odors yes....what I suffer bad before a seizure is smelling stale urine and motion totally sickening as they get stronger.