I've been having seizure clusters in the
past month or so. The seizures
themselves aren't bad, (they're really
short), but when I get a lot of them
together plus stress added to that, my
emotions go haywire. I'm going to
discuss it with my doctor next week and
there may be some things we can do to
better control them.
W/o meds, I would be having
complex-partials and secondary gens, but
with meds, I only have very mild simple
partials (sps's). They average about 15
seconds a piece. The seizures
themselves are not that big a deal.
They aren't pleasurable (as some have
described simple partials). I would
say they are more like a roller coaster
rides. I get that epigastric rising
sensation-- starts around my stomach and
rises to my mouth. Minor fear at
times, but the fear factor (pardon the
pun) is not too bad when it is only a
simple-partial. The emotion is more
one of sadness or frustration at that
level. Emotions are definitely
involved, though-- especially when they
happen in clusters. (they're not so
bad when I only have one or two in a day's
time-- it's more like when I start having
5 or 6. I had 11 thursday-- plus I was
under a lot of stress recently. With
the two combined, I found myself crying
almost all day. (even an absolute
stranger asked me if I was ok because I
was crying so much). Makes sense
since the focus is in the left temporal
lobe. More specifically in the
hippocampus-- I believe in or around the
amygdala. (emotions).
I think what makes it hardest is that
others don't get it. People who know
me hardly see a problem in my health at
all. That's because the
complex-partial and 2ndary generalized
seizures are so well controlled. I
had corrective surgery for my seizures a
while back which helped quite a bit
(though not at first) . I haven't had a
"bad" seizure in a year and a half.
The simple-partials, as I said, are very
short and not at all obvious to an
observer. I can continue with
whatever i'm doing while i'm having one.
(washing dishes, carrying on a
conversation, playing my guitar, etc).
Nobody knows what is happening, except
me. (unless I tell someone). It's
the mood swings (interictal hypomania and
postictal depression--imitates bipolar
disorder, but follows the pattern of my
seizures) that are more of a problem than
the actual seizures themselves. A
friend will ask me "what's wrong" and I
can't explain it. It's not like I can
say that i'm feeling depressed because my
cat died. They just don't get it.
I seem to get the attitude of, "just
get over it/don't make a big thing out of
it." sigh. It's not the seizures
themselves, its the mood swings that
accompany them. I was almost having
feelings of suicide the other day, (not
to the point of carrying it out-- but the
thought of death was sounding nice) but
didn't quite know who to share those
thoughts with. Others just don't
realize the emotional effect that seizures
can have on someone.
Does anyone else run into postictal
depression?
Aiwl
ps be the mood swings true bipolar
disorder (not found to be common in
epilepsy) or a result of the epilepsy
itself (more likely), tegretol is a good
mood stabilizer and topamax is thought to
be helpful with rapid cycling bipolar
disorder. So, either way, i've got
the meds part of it covered.
Last edited by Alice in Wonderland on 02-07-04 19:10pm; edited 1 time in total
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Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Ps Posted: 02-07-04 17:47pm
Ps I should add that, in addition to my
aed's, i've been on ritalin since late
november. Technically, it's
probably not adhd-- or not j_u_s_t adhd,
(though that's how i'm dx'd in addition to
the epilepsy). A more
accurate explanation is probably an
executive functioning deficit which is not
all that uncommon in people who have had
epilepsy since early childhood.
(ritalin is also helpful with this,
however). In addition, I was
recently dx'd (via an mri) with
hippocampal sclerosis. I often
have a hard time with word recall and have
enormous difficulties with name recall
because of this.
Ritalin and similar stimulants (such as
adderal), unfortunately, also have a
tendency to lower the "seizure threshold."
I knew that when I started taking it but
am needing to re-enter the job market and
because of my problems with concentration
and memory, I have had tremendous
struggles in keeping jobs.
(job interviews and decisions about
disclosure about my health is where the
stress is coming from lately, btw).
I talked my doctor into trying me on
ritalin again by telling him that I was
willing to put up with the brief/mild
simple partials if it means that the
trade-off is that I can get back to work.
It never occurred to me
that simple-partials might also bring on
postictal depression.
When I see him next week, i'm going to
talk to him about trying straterra
instead, (which is used for adhd, but is
not a stimulant and does not seem to
effect seizures). We
tried it last summer and it didn't seem to
help much. Though it
helped me to concentrate, it also seemed
to make me a bit hypomanic (hyperactive/on
a high), but I was only on it for 2
weeks-- and straterra takes a while to get
into the system.
Last edited by Alice in Wonderland on 07-16-04 09:05am; edited 1 time in total
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cogentparadigm
New User, Becoming EHEALTHy
Joined: 17 Apr 2004 Posts: 5 Location: Nr Bath, UK
Postictal Depression Posted: 04-17-04 23:35pm
Although I haven't heard of the term
before, thanks to your elequent
explanation I now know what it is and can
give you some kind of reply.
Please allow for the fact that I only
joined today so if I offend in any way I
apologize inadvance.
I have now been told my epilepsy is
intractable.
However I also suffer from complex
partials.
I would say I suffer from simple partials
too, but if you pick up a book in the us
and then the uk they will tell you 2
different things as to what the diagnosis
is, and again if you look on the
internet.
I completely understand your "frustration"
with the fact that other people don't
understand what is happening..Its like
they are for example "on the outside of a
two way mirror." something like that
everyone has their own way of discribing
it.
I too seem to suffer from the same sway in
mood and emotions with my seizures, and
it sounds similar to yourself they can go
to an extreme.
I also take topamax
i came off tegretol a long time ago though
as it made me extemely aggressive.
Cogentparadigm
p.S. Electric or acoustic?
|
Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
I Hear You Posted: 04-18-04 10:23am
Hi,
i think I can relate to what you're
saying. Over the last number of years I
have found that my moods and emotions have
totally been affected by my seizures.
For me, they're tonic (sometimes
tonic-clonic I guess...To the point I lose
conciousness) although the seizure lasts
only about 30 sec. It takes a lot out of
me and all of a sudden (once I come to and
realize what's going on) it feels like my
life is completely upside down. I feel
like a failure, "why did I let this
happen?" I feel embarrased wondering what
people would think if they knew (other
than my family and close friends) I feel
dependant on others to get me places and
totally feel out of control of my life!
It is an awful feeling, accompanied by "is
this going to happen again soon" like I
can never get ahead of the game. I guess
what makes it hard (although I realize
it's not that bad) is that these seizures
happen only every 18months it seems over
the last number of years, but that's why I
say it feel like I can't get ahead. I
just make progress and then bam, back to
square 1.
I was depressed almost 2 years ago. It
was post-partum, however, it caused a
seizure basically out of the blue. At
this point I hadn't even realized I was
depressed but after the seizure I felt
myself slide downhill really fast, very
obviouslly becoming quite depressed. I
thought about my funeral wondering if
anyone would bother to come. I figured
life would be a lot easier on a lot of
people if I died. But then I would go
through in my head who might be affected
by my death and realized that many people
would and would be very upset. I went
over and over this many times and decided
that I was a valued person despite not
valuing myself. At this point I knew I
needed help and I spoke with my family
doctor and I got my life back shortly
thereafter with some meds and councelling.
Although there are worse things in life,
sometimes there are days when it feels
like the whole world is working against
you, nothing goes right and you're
completely out of control...And it all
feels so embarrasing at times and perhaps
feelings of sadness or depression may feel
unjustified. But they're not. I'm sure
there are many people around you who care
for you and the best thing you can do for
yourself is talk to them. If you feel
totally lost on that talk to your family
doctor about help. Councelling did me a
world of good and I am just your everyday
person who needed a little support and an
ear to listen.
I hope you find a way soon to heal.
|
MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 05-10-04 20:01pm
Alice,
i nowhere your coming from, especially
about how people treat you. A good friend
of mine once told me unless you "really"
knew me wouldn't know the majority of the
time when i'm having a seizure.
I too, can keep on doing things while
having most of my seizures, ( dishes,
cleaning, talking, crafts, etc...).
The thing that really upsets me the most
is when others accuse me of not feeling
well, when I am fine..... Or when people
try to tell me my limits.
Having epilepsy is a major pain in the
butt, and depressing. For the most part
people who don't have it have "no" clue
how much it effects our lives.
There are times where I can cry out of the
blue, or just want to scream.....
I belive its just everything all rolled up
togethere, the having to deal with the
seizures, the meds (aren't side effects a
wonderful thing), our health in general,
other people that makes alot of us feel
this way .....
Especially, since its not easily fix by
doctors..... And they basially play a
geussing game with alot of us (me for
one).....
Jill
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello everyone.
I feel the same as you also. I am 21 yrs
old. I was working as a manager at
woolworths, my fionce suffered from
depression, so I sent her on a holiday of
relaxation while she was away I wasnt
coping well at work myself and I couldnt
stop crying one day so I went to the
doctors.The doctor put me on zoloft 100mg,
for only one weeks trial to see how I
felt, my partner came back and one night
she decided it would be a good idea to try
and commit suicide, she almost succeded.I
came into the room at the right time and
called the ambulance.
The next day I was talking to her and I
was crying asking her "why" then all of a
sudden I went all stiff. And fell into my
first ever grand mal seizure. It
continued into roling grand mals. The
ambulance came to get me then and said I
had what was called an acute stress
reaction, due to the events from the night
before. I was referred to a neurologist
everything was normal, it seemed I spent
15minutes in his office for nothing, to
only be told I was a fake and that I
needed psyciatric help. I was so upset,
not knowing why all this was suddenly
happening to me.
I continued to have seizures for a month
before going back to my local gp my gp
said I had a form of epilepsy. And I was
started on an aed (tegretol) I continued
to see a shrink and she said I was not
mentaly ill.
6 months has passed I cant work. I am
currently on 2000mg of epilim a day and
600mg of tegretol a day.
I saw another neurologist and he said I am
a temporal lobe epileptic
and that I suffer from some (pseudo
seizures, partial complex seizures and
grand mal seizures)
i am still going in for more tests because
I am not getting anybetter. I really hate
this epilepsy thing,
and I am trying to stay stress free.
I guess we all have an underlying problem
aswell, and ours is stress/depression.
|
jamal
Experienced User , Rather EHEALTHy
Joined: 05 Nov 2003 Posts: 60 Location: oroville,Ca
I Hear All of You Posted: 05-11-04 08:55am
I feel the same way. My life changed 6
years ago. I'm now 44. I lost my job 3
years ago and I don't drive anymore. It
started when I left my husband 6 years
ago. I rent now i.M on s.S.I. I want to
leave my boyfriend, but then I feel
dependent on him. My son still lives at
home going to college, I feel like there
maid. Ifeel used. I'm tired from the
meds, tired of going to u.C. Davis every
3 months and them changing my meds around.
Tired of getting rides. Tired of crying
at any moment. I.M on topamax.
The only thing that saves me is being a
volunter at assit living home 3 days a
week. I help the activity director and
hang out w/ the old people. They have
alzihimier and dimencha I can't spell. I
love it there. I'm only there 12 hrs a
week but there's a reason why we have
this. You guys just have to pray about
it. I'm always broke since I left that
guy I was married too, and I asked god why
do I have this? There has to be a reason,
my reason is to be w/ those old people and
to be w/ this little kids in my
neighborhood, and go across the street and
watch the baseball games because there
parents don't go there to watch. Thats
why i.M here. You guys probably think i'm
crazy. But I have nothing else to do.
Its better then sitting in this caca hole
apartment. Think about waht we have.
Jamie
|
jamal
Experienced User , Rather EHEALTHy
Joined: 05 Nov 2003 Posts: 60 Location: oroville,Ca
I Hear All of You Posted: 05-11-04 08:56am
I feel the same way. My life changed 6
years ago. I'm now 44. I lost my job 3
years ago and I don't drive anymore. It
started when I left my husband 6 years
ago. I rent now i.M on s.S.I. I want to
leave my boyfriend, but then I feel
dependent on him. My son still lives at
home going to college, I feel like there
maid. Ifeel used. I'm tired from the
meds, tired of going to u.C. Davis every
3 months and them changing my meds around.
Tired of getting rides. Tired of crying
at any moment. I.M on topamax.
The only thing that saves me is being a
volunter at assit living home 3 days a
week. I help the activity director and
hang out w/ the old people. They have
alzihimier and dimencha I can't spell. I
love it there. I'm only there 12 hrs a
week but there's a reason why we have
this. You guys just have to pray about
it. I'm always broke since I left that
guy I was married too, and I asked god why
do I have this? There has to be a reason,
my reason is to be w/ those old people and
to be w/ this little kids in my
neighborhood, and go across the street and
watch the baseball games because there
parents don't go there to watch. Thats
why i.M here. You guys probably think i'm
crazy. But I have nothing else to do.
Its better then sitting in this caca hole
apartment. Think about waht we have.
Jamie
|
Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Posted: 06-12-04 11:56am
Well, I haven't posted here in a while,
but I must say that i'm doing much better.
I did have a few complex-partials this
spring (3) which is unusual for me because
I usually only have simple-partials, but
even still they were very mild and none of
them generalized which seems to be a new
thing for me because my cps's have been
generalizing since my temporal lobectomy
in 1988. (the only negative thing about
the surgery).
Some changes have been made in my meds and
in my opinion, they are for the better.
In february, we discontinued ritalin. My
sps's decreased by about 25% with this
change but I was still having a fairly
significant amount in comparison to the
number I was having before taking ritalin
last november. (they were fairly well
controlled prior to this time). With
this change, I also saw a decrease in the
depression, though some other changes were
occurring as well (in circumstances), and
i'm guessing that because of this I had a
bout of depression in april. (it's
really hard to say what causes what, isn't
it)?
A few other changes that have been or are
being made is that we are aiming for
monotherapy with (generic) tegretol.
This was my request but I gave my doctor
some very good reasons and he agreed:
1. I've lost a significant amount of
weight recently. (40 lbs since last
august and probably 25 of those lbs just
since february). Topomax can cause
problems with appetite loss. Strattera
can as well and since much of this weight
loss has been since february, my guess is
that the latter of the 2 has had a major
roll in my weight loss. (mind you, I
don't mind losing weight, but i'm losing
it awfully quickly and just am not eating
very well. I'm also very limited in what
foods i'm eating anymore. Many foods
just don't taste good or I don't find them
appetizing).
2. Money. I'm not working and one big
hurdle is that if I start working, I will
lose my medicaid. It's a catch 22. My
meds cost about $400 a month. I get no
aid at this time beyond medicaid, housing
assistance, and heating assistance. (no
cash coming in or food stamps). I have
too much money on hand to apply for many
things and just squeak in to get medicaid.
(in most states, I wouldn't even be able
to rec'v it). The only income I have is
child support, but it hasn't been regular
lately. Sometimes it is. Sometimes it
isn't. (i can't count on it though and
depending on it to come in only adds to my
stress). I don't need added stressors
when it comes to worrying about money.
For this reason, I wanted to get off any
expensive meds I was on. (topomax and
strattera). We also changed my tegretol
xr (expensive) to generic tegretol. If I
should lose my medicaid because of a job,
I will now not have to worry about whether
or not I can afford to buy my meds because
they are not terribly expensive anymore.
(considered applying for some drug
assistance programs-- and may have to
consider that in the future, but wanted to
try to simplify things first).
3. Side effects. Beyond the side
effect of appetite loss, topomax also has
cognitive side effects. I was noticing
this. I took a test in early april and
did absolutly horribly on it. I normally
do well on tests too. (scored 136 on an
i.Q. Test only 4 years ago). It's like
i've dumbed down. Part of the problems
was I had trouble following the
directions. How in the world am I going
to keep a job if I can't follow directions
for a simple test? I read where topomax
can cause problems with the cognitive
functioning in the frontal lobe and where
people taken off of it have significant
improvement in this area. Certainly
isn't helping my problems with attention
and following directions any!
Strattera also can cause problems with
high blood pressure in adults. I began
having problems with hbp while taking
ritalin. I'm still taking a diuretic for
this. Besides, if discontinuing topomax
will decrease problems with cognitive
functioning in the frontal lobe, perhaps I
won't need the strattera. There are also
thoughts of returning to ritalin (if
thought necessary) but trying it at a
lower dose than I was taking this past
winter as I seemed to do ok (no
simple-partials) when on 10mg a day but
had trouble when taking 20mg a day.
(money is again an issue and ritalin is
inexpensive).
I'm still in the process of decreasing the
topomax. When I made the first drop, I
was having many many simple-partials an
hour for about 3 days. And they weren't
mild ones either. They were the scarey
kind. That was bothersome but it was
only temporary. I intend on making my
last drop more gradually by decreasing
only half a tablet for 10 days at a time
(50mg) instead of an entire tablet
(100mg). I start decreasing my strattera
the end of this week.
I still have some bouts of "the blues" but
no major depression. Not since last
february. I still think it was because
of all the simple-partials I was having
because on the days that I had a whole
bunch, (a cluster), I would just cry.
~alice in wonderland
p.S. I play the acoustic guitar. I
play a variety of difft types of music.
The song i've been goofing around with
lately is, "carry on my wayward son," but
I also like to play country, bluegrass,
gospel, christian contemporary, 60s folk
(peter paul & mary, kingston trio,
etc), irish folk (tommy makem, clancy
brothers, irish rovers), 60s/70s pop, jim
croce, and especially john denver music on
it.
Even more than the guitar, i've been
having a ball playing my banjo. I have a
5-string. I mostly play gospel and
bluegrass on it. Songs like "lonesome
road blues," "foggy mountain breakdown,"
"dooley," "i'll fly away," and "i saw the
light."
i've been playing both a lot lately. (i
play them on paltalk which is a chat that
uses microphones). I over-did it at
first. (got a bit obsessive), but I
think it has also helped me with my
depression.
|
Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Posted: 06-12-04 12:12pm
Oh, I wanted to add 2 links but they are
about impossible to post on this board.
You have to use a little extra effort to
read the links. (you can't just click on
them or you'll get nowhere). Copy and
paste each link up above in your address
box and then make sure all the letters are
lower case before you push "go" or
"enter."
After reading, I have a question?
Medication. How much do they cost?
From where I stay, it is the most
expensive. Especially for those of us
who cannot find a job. It also depends
on the type and the amount that the
sickness requires.
Also at the current economy, what the
companies want are brainpower. They want
creativeness from the people that they
employ causing retrenchment. Stress,
pressure are also being given to the
remaining manpower. These also cause
more new sickness to envelope from the way
I think eg. High blood pressure,
diabetes, etc.
|
Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Re: Medication Posted: 07-16-04 09:03am
fswhong
wrote:
after reading, I have a
question? Medication. How much do
they cost?
From where I stay, it is the most
expensive. Especially for those of us
who cannot find a job. It also depends
on the type and the amount that the
sickness
requires.
if you are financially having problems
paying for meds, here is a website giving
some information about assistance
programs: http://www.Brainx.Info/fin
ance_1.Html
all letters are lower case except the "f"
at the beginning of the word "finance."
the "f" is capitalized.
fswhong
wrote:
also at the current economy,
what the companies want are brainpower.
They want creativeness from the people
that they employ causing retrenchment.
Stress, pressure are also being given to
the remaining manpower. These also
cause more new sickness to envelope from
the way I think eg. High blood
pressure, diabetes, etc.
you might consider contacting your local
"vocational rehabilitation" office.
They work with people who have
disabilities helping them to find work.
