June 10, 2024 • 12 mins
After a long break (because life decided I needed a plot twist), I'm back! This episode dives into my personal journey with psychogenic non-epileptic seizures (PNES) following a decade-old traumatic brain injury. I'll share the ups and downs of living with PNES, the tough choice to step down from my role as an executive assistant, and how I’m working with my medical team to prioritize my mental and physical health.
I am so excited to return to the ADHD EA podcast, producing short, informative episodes full of insights, practical tips, and my own experiences.
Coming soon: an incredible interview with an AuDHD Mental Health NP, an episode on the Pomodoro Method, and so much more.
Items referenced in the show (these are affiliate links and purchases of these items help fund the pod):
KC Davis - How to Keep House While Drowning
Visual Timer/Pomodoro
More information on PNES from the Epilepsy Foundation
Thank you for joining me on this episode of the ADHD EA podcast
This podcast is brought to you by FWH Productions and was produced and edited by, well, me.
If you’d like to support this podcast, please give it a 5 star rating, share episodes with your friends, and join me on social media:
Thank you for listening!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Claire (00:02):
Hi everyone and welcome to the ADHD EA podcast.
I'm your host, C claire.
I don't know if you've noticed,but it's been quite some time
since the last time I uploadedan episode, and the reason is
because a lot of things havechanged.
First and foremost, I amtechnically no longer employed
(00:22):
as an executive assistant.
Now I want to make it clearthis was a choice that I made in
conjunction with my manager andmy company, because I recently
was diagnosed with somethingcalled psychogenic non-epileptic
seizures or non-epileptiformseizures.
Either term is usable, eitherterm is fine.
(00:43):
About About 10 years ago, Isustained a traumatic brain
injury.
This was due to two concussionssustained inside of a very
short period of time.
According to my journal at thetime it was about three days and
the result is that I now havewhat appear to be seizures but
(01:04):
are not epilepsy.
These episodes, as we'll callthem, I originally thought were
fainting spells due to thepneumonia I had and later on
assumed were cardiac andpulmonary issues and then later
assumed were anxiety and orpanic attacks.
And it wasn't until lastDecember, when I was describing
(01:24):
my panic attacks to a friend ofmine, that she responded in a
very concerned manner,"T hosethose aren't panic attacks.
Those sound like seizures.
As it turns out, she was infact correct.
They are seizures Now they arenot epilepsy.
They do not show up on an EEG.
They will never show up on anEEG With psychogenic,
(01:46):
non-epileptic seizures, pnes ifyou experience something
traumatic and then sustain amild head injury, these can be
the result and essentially it isa software issue in your brain,
not hardware, which is why itdoesn't show up on the
EEG t.
(04:03):
?
I.
.
.
For me personally, when Iexperience high levels of stress
, I experience more of these.
Some do appear to be grand malseizures where I will be on the
ground and shaking and very muchwhat you imagine a seizure to
look like.
I also experience tremors in myhand if I'm trying to do fine
motor skills or if I'm stressedout, and I will experience
localized tremors, shakes,whatever you want to call them,
where my arm or part of my faceor my leg will just sort of
twitch or not work right, andthose can last anywhere from 15
seconds up to three to fiveminutes.
The reason I am no longer anexecutive assistant is because I
was having somewhere in thevicinity of 20 to 30 of these
minor localized seizures a dayis, " sometimes as many as five
of the major seizure-likeepisodes a day.
I have been unemployed for thebetter part of two months now
and while the seizures havelessened, I am still
experiencing about anywhere fromfive to 20 of the minor
seizures a day and at least twoto five major seizures each week
Now, t as I'm sure you canunderstand.
Seizures each week, as I'm sureyou can understand.
That could put quite a bit of awrench in my plans to have this
podcast be produced regularly,and I've been taking this time
to focus on my mental health, myphysical health to, and trying
to work with my now very largemedical team to get this under
control.
"The cool thing about PNES is
that I will experience an aurabeforehand, similar to what
somebody may experience withmigraines.
For me personally, if youimagine that feeling right
before you get sick, whereyou're like am I okay, is there
something wrong?
Something feels off, and thenshortly thereafter, you will
either get sick, you'll comedown with something.
That sensation is what I feelbefore I start seizing.
It's useful, but unfortunatelyit does not allow me to stop
these.
The other part of this thatseparates F what I have from
(04:25):
epilepsy is that during epilepsythere is a lack of awareness.
During the seizure itself,there is a lack of
self-protection.
So if you try to poke somebodyin the eye when they're having
an epileptic seizure, you canpoke them straight in the eye.
They will not close their eyeto protect it.
With non-epileptiform seizures,the eye will close to protect
(04:47):
itself, and I am completelyaware of what is going on during
the seizures.
Now, I am aware that if youhave never witnessed one of my
seizures before, it is scary, itis very uncomfortable and very
concerning to the people who areobserving this, because it does
look bad.
However, in my brain, what isgoing on during the seizure is
(05:11):
this again please stop.
Please just move your limbsnormally.
Please just stand up.
This is too much.
You don't need to be doing thisright now.
Just stop much.
You don't need to be doing thisright now.
Just stop.
As I'm sure you can imagine, Ido not just stop Now.
The other part that separatesthis from epilepsy is that I can
be pulled out of them.
That is not hard and fast.
(05:33):
It doesn't always work that way, but in the event that
something happens especiallysomething that I am not
expecting and I have asubconscious reaction to that
will generally pull me out of it.
Now, if it is a bad one and youpull me out of it, the chances
of me having another one that isworse very shortly thereafter,
within like the next half hour,is quite high.
(05:55):
So sometimes it's worth it forme to just get through it and go
through the" seizure itself andjust let it work its way through
, because that is how my brainis processing stress.
It is obnoxious, to say theleast.
It is very annoying for me toexperience and it's very
frustrating because I don't wantto be doing this and in my head
(06:18):
it seems like it'd be verystraightforward to say, hey,
stop shaking your limbs.
And unfortunately that doesn'twork.
c.
Unfortunately for me and otherpeople who experience
psychogenic non-epilepticseizures or non-epileptiform
seizures, whichever you want tocall it, there isn't a lot of
research into this.
For a long time they werecalled pseudo seizures, which
led to the belief that a lot ofthem were faked.
(06:39):
Now I am certain there areplenty of people who do fake
them for whatever reason,whether it's trying to get
medication, it's attention, etc.
However, I will say that thepreconceived notion of people
faking these is incrediblydamaging to those of us who do
(06:59):
have this and are not faking itand having to essentially prove
to medical professionals thatthis is an actual issue and this
is not something that we'rejust faking.
In mycase, especially in January,
february and March, I ended upin an ambulance at least once.
(07:22):
I ended up in the ER at leastonce.
I am very grateful that I am aveteran because the VA, luckily,
has paid for all of this,because if they did not and I
had regular insurance, thiswould have been a unbelievable
stressor on my familyfinancially.
It would have been a stressoron anybody financially.
(07:43):
I don't know if you've lookedat the cost of ambulance rides
recently, but yeah, now I'vebeen very lucky in that All of
my doctors understand this andare willing to do the research
into this.
A That has not always been thecase at the ER, where I have had
to tell them the name of thisand they have had to episodes go
look it up.
I even had a nurse when the EMTtold her that I was having
(08:09):
pseudos using the outdated term.
But you know I will.
I will let that pass becausethe EMT had been in the business
a very, very long time andit had not been in school when
they shifted from pseudos tonon-epileptiform seizures.
When the EMT told a nurse thatI had just had one in the
hallway briefly .
(08:30):
Thenurse looked at her and went,
but did she?
I was about two or three feetaway.
I could hear her, I could seeher and the result of that fear
of not being believed resultedin the worst night of seizures I
have ever had.
I had nine within a three hourperiod, including one that
(08:51):
lasted more than five minutes ofsevere shaking and trying to
get a hold of somebody, becauseI'm in a ER room with the door
closed and I can't hit my buttonand I'm trying to like flick
off my pulse ox to try and getthe attention of somebody and
unfortunately that didn't work.
Also worth noting that, againdifferent from epilepsy, I can
(09:19):
control some parts of my bodydepending on the severity of the
seizure.
So I always maintain my phoneon me.
I have a way to call my husbandvery, very quickly from my lock
screen.
The lock screen of my phone nowsays hi, my name is Claire.
If I am seizing, please pressdown on my chest very, very hard
(09:40):
and call this number.
It's my husband.
I will likely be okay shortlyIf I'm not.
Call 911.
To say that's depressing to haveas my lock screen is a huge
understatement, but a lot oftimes I am at least able to get
enough control, while my arm isshaking quite badly, to at least
(10:01):
get my phone to the emergencycontact, call my husband and he
knows that if he answers and Iam not talking that I am
probably having a seizure, and Iluckily have a number of
neighbors who either arestay-at-home moms or work from
home who have full permission tojust walk in my house, push
down on my chest until I am okay.
(10:23):
Luckily, that has not been afrequent need.
But in ADHD and neurodivergenceas a whole, we will be
(10:46):
returning to what I originallyintended this podcast to be,
which is short, sweet videos onADHD symptoms, adhd tips and
tricks, personal experiences andthose types of things.
I have recorded an incredibleinterview that I've been wanting
to share with you guys but,frankly, just haven't been in a
place to be able to edit it andget it out to you.
So, with that being said, I amvery excited to be getting back
(11:11):
into this podcast and I can'twait to produce more content for
all of you.
So until next time.
This podcast is brought to youby FWH Productions and was
produced and edited by well me.
If you'd like to support thispodcast, please give it a
five-star rating, share episodeswith your friends and join me
(11:31):
on Facebook by following ourgroup, the ADHD EA podcast.
If you'd like to support thispodcast via Patreon, well, I
don't have one yet, but if I seeenough interest, I will create
one.
Thank you.
Hi everyone and welcome to the ADHD EA podcast.
I'm your host, C claire.
I don't know if you've noticed,but it's been quite some time
since the last time I uploadedan episode, and the reason is
because a lot of things havechanged.
First and foremost, I amtechnically no longer employed
(00:22):
as an executive assistant.
Now I want to make it clearthis was a choice that I made in
conjunction with my manager andmy company, because I recently
was diagnosed with somethingcalled psychogenic non-epileptic
seizures or non-epileptiformseizures.
Either term is usable, eitherterm is fine.
(00:43):
About About 10 years ago, Isustained a traumatic brain
injury.
This was due to two concussionssustained inside of a very
short period of time.
According to my journal at thetime it was about three days and
the result is that I now havewhat appear to be seizures but
(01:04):
are not epilepsy.
These episodes, as we'll callthem, I originally thought were
fainting spells due to thepneumonia I had and later on
assumed were cardiac andpulmonary issues and then later
assumed were anxiety and orpanic attacks.
And it wasn't until lastDecember, when I was describing
(01:24):
my panic attacks to a friend ofmine, that she responded in a
very concerned manner,"T hosethose aren't panic attacks.
Those sound like seizures.
As it turns out, she was infact correct.
They are seizures Now they arenot epilepsy.
They do not show up on an EEG.
They will never show up on anEEG With psychogenic,
(01:46):
non-epileptic seizures, pnes ifyou experience something
traumatic and then sustain amild head injury, these can be
the result and essentially it isa software issue in your brain,
not hardware, which is why itdoesn't show up on the
EEG t.
(04:03):
?
I.
.
.
For me personally, when Iexperience high levels of stress
, I experience more of these.
Some do appear to be grand malseizures where I will be on the
ground and shaking and very muchwhat you imagine a seizure to
look like.
I also experience tremors in myhand if I'm trying to do fine
motor skills or if I'm stressedout, and I will experience
localized tremors, shakes,whatever you want to call them,
where my arm or part of my faceor my leg will just sort of
twitch or not work right, andthose can last anywhere from 15
seconds up to three to fiveminutes.
The reason I am no longer anexecutive assistant is because I
was having somewhere in thevicinity of 20 to 30 of these
minor localized seizures a dayis, " sometimes as many as five
of the major seizure-likeepisodes a day.
I have been unemployed for thebetter part of two months now
and while the seizures havelessened, I am still
experiencing about anywhere fromfive to 20 of the minor
seizures a day and at least twoto five major seizures each week
Now, t as I'm sure you canunderstand.
Seizures each week, as I'm sureyou can understand.
That could put quite a bit of awrench in my plans to have this
podcast be produced regularly,and I've been taking this time
to focus on my mental health, myphysical health to, and trying
to work with my now very largemedical team to get this under
control.
"The cool thing about PNES is
that I will experience an aurabeforehand, similar to what
somebody may experience withmigraines.
For me personally, if youimagine that feeling right
before you get sick, whereyou're like am I okay, is there
something wrong?
Something feels off, and thenshortly thereafter, you will
either get sick, you'll comedown with something.
That sensation is what I feelbefore I start seizing.
It's useful, but unfortunatelyit does not allow me to stop
these.
The other part of this thatseparates F what I have from
(04:25):
epilepsy is that during epilepsythere is a lack of awareness.
During the seizure itself,there is a lack of
self-protection.
So if you try to poke somebodyin the eye when they're having
an epileptic seizure, you canpoke them straight in the eye.
They will not close their eyeto protect it.
With non-epileptiform seizures,the eye will close to protect
(04:47):
itself, and I am completelyaware of what is going on during
the seizures.
Now, I am aware that if youhave never witnessed one of my
seizures before, it is scary, itis very uncomfortable and very
concerning to the people who areobserving this, because it does
look bad.
However, in my brain, what isgoing on during the seizure is
(05:11):
this again please stop.
Please just move your limbsnormally.
Please just stand up.
This is too much.
You don't need to be doing thisright now.
Just stop much.
You don't need to be doing thisright now.
Just stop.
As I'm sure you can imagine, Ido not just stop Now.
The other part that separatesthis from epilepsy is that I can
be pulled out of them.
That is not hard and fast.
(05:33):
It doesn't always work that way, but in the event that
something happens especiallysomething that I am not
expecting and I have asubconscious reaction to that
will generally pull me out of it.
Now, if it is a bad one and youpull me out of it, the chances
of me having another one that isworse very shortly thereafter,
within like the next half hour,is quite high.
(05:55):
So sometimes it's worth it forme to just get through it and go
through the" seizure itself andjust let it work its way through
, because that is how my brainis processing stress.
It is obnoxious, to say theleast.
It is very annoying for me toexperience and it's very
frustrating because I don't wantto be doing this and in my head
(06:18):
it seems like it'd be verystraightforward to say, hey,
stop shaking your limbs.
And unfortunately that doesn'twork.
c.
Unfortunately for me and otherpeople who experience
psychogenic non-epilepticseizures or non-epileptiform
seizures, whichever you want tocall it, there isn't a lot of
research into this.
For a long time they werecalled pseudo seizures, which
led to the belief that a lot ofthem were faked.
(06:39):
Now I am certain there areplenty of people who do fake
them for whatever reason,whether it's trying to get
medication, it's attention, etc.
However, I will say that thepreconceived notion of people
faking these is incrediblydamaging to those of us who do
(06:59):
have this and are not faking itand having to essentially prove
to medical professionals thatthis is an actual issue and this
is not something that we'rejust faking.
In mycase, especially in January,
february and March, I ended upin an ambulance at least once.
(07:22):
I ended up in the ER at leastonce.
I am very grateful that I am aveteran because the VA, luckily,
has paid for all of this,because if they did not and I
had regular insurance, thiswould have been a unbelievable
stressor on my familyfinancially.
It would have been a stressoron anybody financially.
(07:43):
I don't know if you've lookedat the cost of ambulance rides
recently, but yeah, now I'vebeen very lucky in that All of
my doctors understand this andare willing to do the research
into this.
A That has not always been thecase at the ER, where I have had
to tell them the name of thisand they have had to episodes go
look it up.
I even had a nurse when the EMTtold her that I was having
(08:09):
pseudos using the outdated term.
But you know I will.
I will let that pass becausethe EMT had been in the business
a very, very long time andit had not been in school when
they shifted from pseudos tonon-epileptiform seizures.
When the EMT told a nurse thatI had just had one in the
hallway briefly .
(08:30):
Thenurse looked at her and went,
but did she?
I was about two or three feetaway.
I could hear her, I could seeher and the result of that fear
of not being believed resultedin the worst night of seizures I
have ever had.
I had nine within a three hourperiod, including one that
(08:51):
lasted more than five minutes ofsevere shaking and trying to
get a hold of somebody, becauseI'm in a ER room with the door
closed and I can't hit my buttonand I'm trying to like flick
off my pulse ox to try and getthe attention of somebody and
unfortunately that didn't work.
Also worth noting that, againdifferent from epilepsy, I can
(09:19):
control some parts of my bodydepending on the severity of the
seizure.
So I always maintain my phoneon me.
I have a way to call my husbandvery, very quickly from my lock
screen.
The lock screen of my phone nowsays hi, my name is Claire.
If I am seizing, please pressdown on my chest very, very hard
(09:40):
and call this number.
It's my husband.
I will likely be okay shortlyIf I'm not.
Call 911.
To say that's depressing to haveas my lock screen is a huge
understatement, but a lot oftimes I am at least able to get
enough control, while my arm isshaking quite badly, to at least
(10:01):
get my phone to the emergencycontact, call my husband and he
knows that if he answers and Iam not talking that I am
probably having a seizure, and Iluckily have a number of
neighbors who either arestay-at-home moms or work from
home who have full permission tojust walk in my house, push
down on my chest until I am okay.
(10:23):
Luckily, that has not been afrequent need.
But in ADHD and neurodivergenceas a whole, we will be
(10:46):
returning to what I originallyintended this podcast to be,
which is short, sweet videos onADHD symptoms, adhd tips and
tricks, personal experiences andthose types of things.
I have recorded an incredibleinterview that I've been wanting
to share with you guys but,frankly, just haven't been in a
place to be able to edit it andget it out to you.
So, with that being said, I amvery excited to be getting back
(11:11):
into this podcast and I can'twait to produce more content for
all of you.
So until next time.
This podcast is brought to youby FWH Productions and was
produced and edited by well me.
If you'd like to support thispodcast, please give it a
five-star rating, share episodeswith your friends and join me
(11:31):
on Facebook by following ourgroup, the ADHD EA podcast.
If you'd like to support thispodcast via Patreon, well, I
don't have one yet, but if I seeenough interest, I will create
one.
Thank you.
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