Kelly,
That is a good letter and reminder!!!.
Millie
----- Original Message -----
From: Kelly Porter
To: epilepsy@yahoogroups.com
Sent: Monday, April 08, 2013 6:30 PM
Subject: Re: [epilepsy] Epilepsy depression
Leah,
First, I'm sorry things have gotten so difficult.
My story, short version. I was 35 when I became symptomatic, but I went
undiagnosed for about 18 months. At the time I had a career I loved,
and a 4 year old son. I went from active working wife and mom to a shut
in sleeping 18 hours a day and undiagnosed. I had a grand mal in Dec
2005 which finally led to my diagnosis. By then I was having up to a
dozen complex partials every day. My seizures remained intractable,
even though I was on the maximum dosage of up to 3 epilepsy meds at
once. I was still having daily seizures, up to 6 a day. I had surgery
in March 2008 and have been seizure free since then.
This is what I would tell you to do, based both on experience and hindsight:
-Get to a level 4 epilepsy clinic. These are clinics that specializes
in treating intractable seizures, it is all they do and they are
certified clinics. You can find the one closest to you by going to
http://www.naec-epilepsy.org/ Search by state and find one that is a
level 4, they are the best. If you have to drive a few hours to get to
one, do it if you can make it work in any way. Most insurance companies
will cover them because they are officially neurologists.
-Start seeing a psychologist, preferably one with experience treating
people with epilepsy. You can ask your neurologist/epileptologist for a
referral. This will help you sort out the depressive feelings.
-Don't stay inside your house to many days in a row. Make sure you get
outside, even if it's just for a short walk, or to sit under a tree, or
watch your kids play. Lack of sunlight can worsen depressive symtoms.
-Keep a seizure log. You want to track dates, times, type, length (if
someone times it), post dictal reactions. Also, every day track hours
of sleep, what time you took your meds, stressful situations, what you
ate, how much time you spent doing what activities (hours on computer,
tv, reading, exercising ect.) This may help in finding possible
triggers. Don't be afraid that you will have "too much information".
Just get a note book, put the date on the top of the page, and write
stuff down. It doesn't have to be super organized, but some sort of
pattern is good. This will be super helpful to an epileptologist. If
you have someone in the house with you most of the time have them help
you keep this log.
-Track your side effects from your meds. It is not at all uncommon to
have depression with epilepsy and some meds make this worse. Don't
accept that "this is just how you have to feel". It isn't, your
neurologist/epileptologist should be helping you manage this.
-Remember, you are not "an epileptic" you are a person. A person who
happens to have epilepsy. It is an obstacle not a definition of who you
are. Tape this somewhere you will see it every day "Epilepsy does not
and will not define who I am." Make sure your family knows that as
well, you are still the same person you just have an obstacle to over
come. At the moment you are on the uphill side of the climb, but the
downhill side will come.
-Stay connected with support from those who have been where you are.
Stick around, ask questions, vent, "cry" via an email. We all get it,
we know what it's like, you are not alone in this.
Keep us updated.
Kelly
On 4/8/2013 9:19 AM, leahfary wrote:
>
> I am struggling with a depression that is worsening due to my epilepsy.
>
[Non-text portions of this message have been removed]
[Non-text portions of this message have been removed]
| Reply via web post | Reply to sender | Reply to group | Start a New Topic | Messages in this topic (4) |
No comments:
Post a Comment