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Eunnie

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Hi! I'm new to this site, but not to epilepsy. I've was diagnosed with epilepsy when I was 4 years old. Lately, my seizures have been getting worse and more frequent. I've stopped reacting to my medications and am constantly in and out of the hospital. My friends claim to understand what's going on and how I feel, but I don't feel like they do. I need to talk to someone who understands what I'm going through. I have generalized seizures, all exclusively during the day. I haven't had a seizure past seven pm since I was eight years.

I'm looking forward to reading around the forums and talking to people who understand epilepsy.

Lots of love,
Eunnie :)
 
Hi Eunnie and welcome to CWE!
Looking forward to seeing you around the forums.
 
hello
bit confused on the 7pm bit very precise time that odd..
I think friends family try to understand but I found they don't like talking about it only someone else with e can know the physical side do to our psychological side but I acknowledge it can be frightening for the loved ones
 
seagull said:
hello
bit confused on the 7pm bit very precise time that odd..
I think friends family try to understand but I found they don't like talking about it only someone else with e can know the physical side do to our psychological side but I acknowledge it can be frightening for the loved ones
Click to expand...
some people tell you there is know difference between generic and name brand but they can't explain why my seizures go through the roof either.
There is a slight difference in the make up of the pill and I talked with my pharmacist about it.
 
Hi Eunnie --

Welcome to CWE! Make yourself at home. :)
 
Welcome to CWE, Eunnie.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.
 
Welcome fellow Floridian!
You will find much love and support here. How old are you now?
M
 
hi eunnie, this is my first post too. I'm a brit writing this when i should be asleep. I'm 44yr old and have had e since 12yrs. I'm on tegretol slow release. I find these to act more evenly than the standard tegs. Don;t understand the daytime only triggers. Do you have an opinion why this happens? i totally empathise with you about epilepsy. The effect on my confidence and subsequent relationships with family and friends was not good. However i have got mine under control with a blend of AED's healthy lifestyle choice, and strength and determination. avoid stimulants (coffee, sugar, too much screen time tv or pc). regular sleep is vital. If i don't sleep and exercie my seisure threshold drops dramatically. do you think your meds are at a theraputic level. have you had any major changes in lifestyle or circumstances that may have caused the increased frequency of siezures?
 
I was on Tegretol for several years and I had no problems with it. Have you had any problems with it?
 
Eunnie said:
I'm 18 now.
Click to expand...
If you ever want to talk to someone a bit more your age about it it, I have just turned 22.
My epilepsy got particularly bad at 18/19 time, it could be a hormone issue, or it could be other circumstances, like stress.
Sometimes there is just no reason to it all, and there is no use trying to understand it.

I know my friends who know about the epilepsy, don't understand, even if they have read up on it.
My mother feels she does, as she has a bad medical history, but I can't get through to her that it isn't the same.

Only you know how you feel, something I used to be guilty of is allowing my family to tell my doctors "how I am".
So my mum would be telling him that I seem much better, when in fact I feel awful.

Sent from my SM-G920F using Tapatalk
 
Ruth said:
I was on Tegretol for several years and I had no problems with it. Have you had any problems with it?
Click to expand...

I've had a so-so experience with it so far. I don't hate it, but yet I don't love it.
 
najd2015 said:
Don;t understand the daytime only triggers. Do you have an opinion why this happens? have you had any major changes in lifestyle or circumstances that may have caused the increased frequency of seizures?
Click to expand...

Nobody understands the daytime triggers. I've had two different neurologists straight up tell me they don't understand why my seizures are only during the day. As for the circumstances, take your pick; new school, new job, and new apartment.
 
When I was between 16 and 17 I would only ever had seizures between when I wake up and midday.
Then it moved to midday till six.

Sent from my SM-G920F using Tapatalk
 
Nobody understands the daytime triggers. I've had two different neurologists straight up tell me they don't understand why my seizures are only during the day.
Click to expand...
Studies have shown that there's a loose correlation between the region of the brain that some seizures originate in and the time of day that they occur:

Occipital seizures peak between 4:00pm and 7:00pm
Parietal seizures peak between 4:00am and 7:00am
Frontal lobe seizures peak between 4:00am and 7:00am
Mesial temporal lobe seizures have a primary peak in the late afternoon between 4:00 and 7:00pm and a secondary peak in the morning between 7:00am and 10:00am

These don't apply to everyone (c.f. nocturnal seizures), and some folks have seizures that occur in more than one region, but there does seem to be a pattern, perhaps related to circadian rhythms and external rhythmic or cyclic factors (like daylight).
 
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