There ARE NO SAFE anti-epileptic drugs ... yet ....
The stigma we constantly deal with from day to day is definitely a downer.
What about a lot of 'normal' people who turn to alcohol for their lift? Did they ever study that one?!
I know that I've encountered some pretty ignorant people, even adults. Kids are getting education on prevention of bullying. Hopefully, at some point, awareness of this disorder will be come more prevalent and acceptable to the general population. I personally encountered a few after school fights and severe mockery to the point that they also did the same thing to my normal sister. I was fortunate enough to have a good teacher who intercepted in my favor by calling my dad to wait at the end of a street. I ran for one block followed by about 5 other kids (one was tall) and got into my dad's truck. Those kids were in major trouble after that one. Is that a normal happy situation for anybody?!
Last edited by alivenwell; 02-01-2008 at 08:25 PM.
I think that is a good point xenome, one that Rebecca had with me last night. Hers are not under control yet either, and yet she doesn't think the meds are worth putting up with the additional side effects.
I have her seeing a therapist weekly to deal with the dark thoughts and learn ways to find brightness in her days. For her is is helpful to know about other peoples challenges and keep track of reasons to be grateful.
I agree with you though.. it is a lousy situation to be in, and a good enough reason to walk with a dark cloud over you most days.
I have been wondering lately if a persons GI tract is not working at optimum levels, if perhaps the anti-epileptic drugs might be absorbed at a rate that is not helpful and perhaps could be travelling through the blood stream at a harmful rate. Just curious.
Wonderful Question Xenome - Here are some answers
because those with Epilepsy "CAN" also
have a psychiatric / psychological issues
associated or in conjunction with it; but
not everyone does.
When it comes to research studies, such
are documented and elaborated in those
clinical studies of how many have such
known psychiatric / psychological issues
in conjunction with their epilepsies.
(n=xxx) for males and females as well
as those who do not (n=xxx) for males
and females; and then the comparison
chart is all well defined; that is in a very
well written article / journal / clinical
Hope this all brings it down and narrows
it down to perspective to your question
"How do I know if it's the pill or the
other problem or both?"
Such clinical findings that are very well
written and defined will also remark if
such (n=xxx) of those who have mental
illness in conjunction with their epilepsy
if there was a rise, decrease, or remain
unchanged - or if a specific sex tends to
respond better to this XXX brand of
drug than the other.
Those clinical findings and studies are
the ones that are the best, detailed to
the core - are the ones worth all your
time in studying and looking into ...
especially when there are a large vast
number of people involved with the case
studies; whether to a specific continent
or worldwide research. In addition I
must also add, those also gain the most
attention, further researching, studies,
I have always wondered if it is the pill the other problem or both.
I have suffered from depression since I was in middle school before I started having seizures.
I did attempt suicide at one point in my life about 12 years ago. the only seizure med I was on then was dilantin. I was going through a very rough time then and very depressed.
My pysch, asks me everytime I see him, "Have you been having any thoughts of suicide?)
My answer is almost always the thought comes to my mind at times, however, I won't do it, I know it is not the answer to all my problems and more.
I have bi-polar along with my epilepsy and once I was diagnosed with the bi-polar he did not give me any extra meds because the seizure meds I am on also are used to treat the bi-polar.
I am on Carbamazine(simple partial) and Lamitical and the generic for klonopin.
I think I am just skeptical about studies like these. Awhile ago I read that antidepressant medication
increases suicide risk and I remember thinking that suicide is caused by being depressed and so if
I were doing a study about antidepressants then I would come to the conclusion that the pills were not helping.
I dont think I have a mental illness or anything, but the fact that I have uncontrolled seizures and its affected
my life so much, work, driving, dating, etc. that I do walk with a dark cloud over my head. So when I heard
about this study I thought that it was phony because my epilepsy causes my dark cloud, which in turn would cause my suicide and not the medication I take.
Though Im not a doctor and I could be wrong. It is just how it appears to me.
anti-depressant medications out there
that actually 'CAN' make an individual
more depressed than they were!
In a true clinical studies - these are
so noted; specifically!
I can truly understand your skeptical
feelings; but the clinical studies and
findings that I am in reference to are
based on multiple Universities and
participating Hospitals and piles of
Professors, Neuroscience Specialists,
Neurologists / Epileptologists and
Surgeons, and so on - the list of all
the individuals are specifically noted
and can be as many as 20-50+ people
involved! These aren't low-ranked
individuals who are dealing with the
issue(s) here - these are top-notch
In some huge clinical studies - they
have it all divided up; Neurology,
Psychology / Neuropsychology,
Psychiatry, Pharmacology / Neurophar-
macology / Toxicology, Neurosurgery,
neurologist-radiology (if applies), et cetera.
The breakdown goes down to the core.
This is what I am in regarding to
specifically; My apologies if I wasn't
clear in my original post.
No Im sorry. Sometimes I have trouble concentrating.
You were very clear in your other post.
I understand what you are saying.
on the SECOND post was JUST AS
VALID and IMPORTANT ... a very STRONG
I'm very glad you brought it up!
I am skeptical of such studies too, because far too often we receive information years past that prove those studies wrong. Plus there is always the obvious outsider that can react differently.
My son was on one or two of these mood equalizers and he started showing signs of depression. I chalked it up to the fact that he had made some pretty bad choices in his life, never even questioning the drugs. The drugs had evened out his temperament, but caused the dark cloud too. It wasn't until the next year that I started hearing about the suicidal tendencies. No doctor had ever made this suggestion to me.
No one has offered me that advice on Rebecca's four anti-epileptic drugs either. I have had to do the research myself. Our neurologist didn't even know that the FDA had raised the risk factor on Trileptal either.
This to me is all the more reason that we need to be advocates for our own health. It is all a case by case experiment.
xenome - what do you find puts you in a good mood? Do you ever wake up excited and say that you get to do "xxxxx" today? How do you treat yourself for getting through another day?.... sorry all the questions.
Well, I will be honest and say that as a child I had problems with depression and was not diagnosed until I was 40. But everytime we talk about these issues , the meds, depression,suicide because my son has epileptologist to and all the other stuff above, we have to look up. And find answers. Mine is excercise. Even though now it triggers seizures, once I get started and keep going the seizures stop depression gets better. The better I feel my son feels. I am on meds for it, but it is also about what I can do to help myself.
Xenome, I admire your honesty...
...and I'm REALLY glad you are a part of the fanatastic membership here. It's stories like yours that remind me to think positively...and remember what GOOD I've done.
I, too, look forward to funtime with the kiddos when things get too down. And you 100% correct about the young teenager...we affect others around us everyday!
It is my belief we are all here for a purpose. And we do not leave this earth until our job is finished. Some are here as an example, others to keep harm at bay. Even those who torment us have a reason to exsist.
We must all find our place. Glad you are still here.
My epilepsy is uncontrolled. But you have to be responsible for finding what works for you. If my doc wants to change meds I don't always go along with it.We work together as a team. It's not all epilepsy, it's sometimes my kid, sometimes it's because Im not working and I need to get out more. I have been on almost all those meds if not all. We have to pick our selves up do our research and move on. Not to sound insensitive.I have felt suicidal . My docs know. I have a kid with ep. What am I going to teach him? Teresa
There's been times I've wanted to throw
in the towel and end it all. To be honest
Epilepsy Sucks! (to quote from another
person who said it). I've been on tons
of meds and there's been times if I hear
a neurologist say "Here let's try ...." one more
time I am GOING TO SCREAM!
I've been through 'assorted cocktails'
like crazy. I've been put on meds where
it's positioned me to be 'beside myself'!
Doesn't even account for the times I
just can't take it anymore! Never mind
My epilepsies are intractable and to add
insult, my body is extremely prone to
develop tolerance / resistance to anti-epileptic drug or
anti-epileptic drugs over a period of time ~ where it
has to be discontinued for awhile and
something else in its place.
It's enough to drive one batty!
I have been doing my own research on meds. I just type in prescribing information (name of med) in my yahoo search. I always make sure that I find one that is for doctors and pharmacists not the general public. This gives me a ton of information on the med which includes studies and results. It also lists all side effects, like the ones the doctors don't tell you about. These are very lengthy documents and sometimes hard to read. You can also go to the manufacturer's website and find the prescribing information. I have also learned that if you think you are having a side effect that is listed as rare, you can call the manufacturer and report it. They take all the information and then send you a report to verify the information. My friend, Jeanns (program director-local Epilespy Foundation) called when Nicole's behavior had changed since she started Lamictal. Of course I had signed a release form for her to do this. I then called them myself and reported her behavior. Jeanns is so very helpful and I am so glad that God put her in my life, she has taught me so much about Epilepsy and what to do.
I think that the reason that people who have Epilepsy have a risk of suicide is because unfortunately, it does change your life especially if you have not had it since childhood. I'm sure that the suicide rate for people with conditions such as AIDS is higher also. Anything that alters your life has got to take a toll on you not only physically but emotionally. Even though I do not have Epilepsy, it does take a toll on our family. I am so very thankful for this forum where I can learn from others and share information.
Updated News From Epilepsy.com
Here's an Updated News from Epilepsy.com
The FDA Alert about AEDs and Mood: Physicians offer Expert Opinions
I have to agreee with xenome on this subject, I'm depressed all the time, but I don't blame it on my seizure meds, I blame it on the epilepsy and the fact that it has ruined my life, I can't work, I can't drive. I'm tired and sore all the time because of all the seizures, who wouldn't feel suicidal, and depressed?
My Doctors if they were here would have
posted to tell you that I'm one stubborn
strong-willed, high spirited woman
without a second thought!
My Doctors, especially my Primary, often
has to scold me or remind me often ...
to back off - and they're right.
People say "You match your zodiac sign
very well - Aries, the firey Ram". I do
not like to be constrained, restricted,
or held down - that's the truth! I will
butt my way up like a battering ram;
and that's exactly what I attempted to
do when I first learned that they placed
me and prearranged me for SSDI, SSI,
Medicare & Medicaid AND Food Stamps!
I was beyond FURIOUS!
I wanted to PROVE every single Doctor,
Neurologists, Psychiatrist, Neuropsycho-
logists, Vocational Rehabilitation, Social
Security, You-Name-It .... W-R-O-N-G!!
Oh did I fight! I had to persuade the
Vocational Rehabilitation Administrator
and Counselor to give me a shot; and
I must had wearied them (*laughs*),
but I never gave up - but that day did
come after many years of trying every
single thing under the sun (and moon),
it ended up in a failure. They threw in
Oh No!!! UH-UH! Not me - no way! We
(my former spouse and I) also had our
own businesses, but being the stubborn
young woman who just wouldn't take
"NO - you cannot gain lawful employ-
ment" for the final answer. Went on to
attempt it in another way. In spite of
the success of these businesses, it was
doing absolutely no good to my own
health! All in all - it finally narrowed
down to selling the last business to
another Major Corporation. (My ex just
handled the employee supervision and
mostly out on the fields - I did all the
administrative work and ran these
The towel was thrown in; then I once
again - tried to sneak around the back
door and tried to work; but that was
very short lived due to a critical car
accident nearly 20 years ago. While
true my ex and I were Pastors or
Associate Pastors but it wasn't sufficient
to live on, I did not receive any pay,
however my ex did; working a few
hours a week in the church was some-
thing that came out of our own hearts,
we would have done this for free; for
much of the money that went to the
church went to pay the expenses and
bills - there were hardly any overhead
or excess if any.
But when that day came, it just dawned
on me when my old Vocational Rehab.
Counselor, who now (at that time) was
an Administrator, when we ran into each
other at a Mall - she talked with me
about my "stubborness" and told me
simply put to "knock it off". (She always
was very blunt!)
She was right. I knocked it off. It's a
very hard thing to do, but she told me
that there were plenty of things I could
do at home for there were always things
that needs to be done at home (TRUE!).
And then went on to explain that I will
need to learn to adjust; and she got
back in touch with SEA (Suncoast epileptologist-
lepsy Association) to work with me to
learn to adjust and provide counseling.
However my ex wouldn't permit this;
and I had to learn this on my own.
I will be very straight-forwarded and
admit - I am very hyper, and I am so
blessed with my Primary who has been
working with me to 'tone it down' with-
out even having to use medications at
all, just learning to use self-control.
One of the hardest things is - I have to
"slap myself silly" (not literally, just a
figure of speech) out of feeling sorry
for myself and refocus myself; for if
I let my mind wander or let it go idle,
I fall into that trap / pit - then I start
feeling depressed and down.
I feel like I've been stuck in a quicksand
and can't get out and there's no one
there to get me out. I feel like I'm all
alone. Frustration builds in, and I feel
like I'm drowning and the nearest life
boat is millions of miles away and no
one cares! I've shed many tears where
I've cried to sleep, because I hate
epilepsy, I hate this birth defects, I
hate this neurological problems on top
of all of this, I hate to the fact I'm now
profoundly deaf and I'm a rabid and
avid musician, I hate to the fact I used
to sing and can't anymore, I hate to
the fact my vision is going - I hate it
all and it's not going to improve or get
better .... it is ONLY GOING TO GET
WORSE AND FAST!
But then I realize when I come to the
point and I ask myself ...
'WHAT AM I ACCOMPLISHING HERE?'
So I snap myself out of it, I look for
something to do, even when I don't
"feel like it"... I do it anyway... once
I start getting moving ... slowly my
focus begins to shift and my thoughts
begins to focus on what I am doing,
but I also have a problem with when
I begin something, I can't STOP! My
mind then begins to race, at least I'm
out of it, and I'm smack into another
This is something I am constantly work-
ing on, and my Doctors are helping me
with it, they know my brain isn't always
functioning or in sync. But I've got to
learn somehow to get in control or a
hold of myself so I don't overdo it and
put myself into a seizure-mode risk.
Setting a task schedule would do no
good for me, because I'm the type that
will FINISH the task once I start it, I
don't care if it's 11 PM, 3 AM or what-
ever ... I start - I WILL FINISH! I'm
not a 'divider', do this part today and
the other part tomorrow. I just cannot
do it. I've tried. Even my own son and
my neighbors have had to remove tools
from me and say "That is enough for
now, and tell me to take a nap." (They
just started to do this last month)
This is something I have to deal with
with my brain going in all different
directions at times; I do get lost or
|depakote, depression, keppra, lamictal, lyrica, neurontin, side effects, tegretol, topamax, trileptal|
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