Anyone else having 20+ seizures per day?

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BillyG - 11 Mar 2008 04:37 GMT

I'd like to hear from anyone else who's having 20 or more seizures per
day of benign (SPS) nature. I was diagnosed with a glioma in the left
temoral lobe back in 2003 and most recently am having upward to 100
SPS as a conseqeunce. I've been taking Dilantin and Keppra but more
recently it is as if the Keppra isn't working. I've read a small
percentage of people develop resistance to the drug over time. More
likely in my case it is just continued advancement of the tumor.

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G. - 11 Mar 2008 14:26 GMT

> I'd like to hear from anyone else who's having 20 or more seizures per
> day of benign (SPS) nature. I was diagnosed with a glioma in the left
[quoted text clipped - 3 lines]
> percentage of people develop resistance to the drug over time. More
> likely in my case it is just continued advancement of the tumor.

It may not be so much resistance to the AEDs, but a small percent of
people don't get to 100% control (like I have), or are these more
recent (as in last 3--? months)?
If they've been there since before the medications were started,
could it be they've reduced the intensity of what you first had, but
are not able to fully control the szr. type.

Also what do you mean by SPS -- is that an Aura, or a stronger szr.?
Even after I got full control I would get 4-6 auras a week over about
4-6 weeks even after I was at target dose. In my case by staying on
my target dose, mine (luckily) stopped after that period.
Does your Dr. have any concerns about you still having that
frequency of sps's ? Depending on the cause that might be best they
can do? until more specific meds. might be developed to help you.
We all hope so, G./

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Sofia - 26 Mar 2008 02:30 GMT

>> I'd like to hear from anyone else who's having 20 or more seizures
>> per day of benign (SPS) nature. I was diagnosed with a glioma in the
[quoted text clipped - 10 lines]
> could it be they've reduced the intensity of what you first had, but
> are not able to fully control the szr. type.

Hi Billy

I'm Sofie and I thought I had to write to completely agree with Gordon
as I also get more than 20 seizures each day. I'm actually sitting
writing this post at the moment with one arm in a sling, and a
fractured, crunched up shoulder after I fell against the wall during a
tonic seizure whilst hubby was walking the dog.

Now I'm stuck on the settee most of the day and hubby's doing all the
cooking and housework again - just like when the same thing happened
during my rib injury in Dec/Jan. I'm afraid hubby simply can't chance
my having a seizure and hitting the ground again you see, as I have so
many different types of seizures, and so many of them, he simply can't
count them all - and neither can I as I don't get a sign they're
coming!

About the AED's now. My neurologist prescribes me Tegretol Retard and
Zonisomide. They're rather good as it goes... for my Tonic Clonic's!
He's actually helped me bring them right down from around 3-4 per month
to only about 1 per month which I'm really quite happy about. I'ts just
the others that come and go in unpredictable high numbers that are
giving me the trouble. Poor Doc, he's tried almost every AED in the
book to try and control them, I think I've bloody exhausted him to
death!! :-(

I suppose you probably drive your Doc completely bonkers too!! :-)

Sofie

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BillyG - 08 Apr 2008 02:03 GMT

Hi all,

Sorry to have taken so long to reply.

When I was in my tweens I knocked myself unconscious hitting my head
on the curb from a bike accident. For the following 7 years I'd have
a predictable muscular seizure whenever I was anxious and had to
suddenly move from a stationary to mobile position. My parents and
doctors mistakenly took this as absense seizures and prescribed a high
dose of phynebarbital that did nothing to relieve the condition. For
whatever reason the seizures resolved themselves for the most part by
the time I entered college at which point I stopped taking
medication. The seizures I have now are clearly due to a brain tumor
that may have been present back in my teens and in all this time not
once have I lost consciousness or perception of time unlike most
seizures. In the past my seizures seemed to envolve most of the
exterior of the right side of my body but over the past 3 months most
have been limited to the right side of my head and throat. My tumor
is causing facial paresis (muscle weakness) on the right side of my
face that is causing some visible droop of the mouth on that side.

A fellow named Rick from Australia emailed me that he was having 1000
seizures per day and undergoing a 5th operation on the left temporal
lobe to correct about three weeks ago. Haven't heard from him since
so if anyone has I'd appreciate learning how he's doing.

On Mar 25, 9:30 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com>
wrote:

> >> I'd like to hear from anyone else who's having 20 or more seizures
> >> per day of benign (SPS) nature. I was diagnosed with a glioma in the
[quoted text clipped - 42 lines]
> --
> Please visit my deviantART page:http://sofen.deviantart.com/

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