War on Epilepsy

[Birdbomb]

Just a few minutes ago, on another forum, I just read the post of yet another person with epilepsy has died. She was 17. In the span of less than 4 weeks, 4 different people for 4 different forums have died! One of them being my friend, Riva.
When I was 19 my best friend went status and died in the ER.

Too many people are dying. They are too young.

Now I read on different forum that, several people are having problems, they have become "unstable" and their meds aren't working as it should. Is it the time change, season change, or something completley different?

If we are eating right, getting proper sleep, take our meds or do our yoga, or whatever and it's still happening, how can we battle this disorder? What the hell is going on?

GRRRRRR!!! :soap:

 

[brain]

Down With Epilepsy!

Add 3 more to the list of this past
week. 3 from myspace E groups
passed away and all were young!



I HATE
EPILEPSY!

 

[brain]

Too many people are dying. They are too young.

Now I read on different forum that, several people are having problems, they have become "unstable" and their meds aren't working as it should. Is it the time change, season change, or something completley different?

If we are eating right, getting proper sleep, take our meds or do our yoga, or whatever and it's still happening, how can we battle this disorder? What the hell is going on?

GRRRRRR!!! :soap:

Birdy;

I don't know - but I'm battling with these
STUPID E's myself too - and I've posted it
before, and I'll post it again, Fall (Autumn)
and Winter are NIGHTMARES from HELL for
me! WHY!?!??

Beats me! On meds or Off meds - it doesn't
matter! My own family doesn't think I'm going
to last this year; they don't think I'm even
going to make it to Christmas!

Strangely, my own ex feels the same way
and he can sense it.
:?:

I have every intentions to F-I-G-H-T!

 

[Bernard]

 

[Birdbomb]

I sit here in tears, I just got a pm back form the girl's mother and I am just sick with this!

I have posting on these boards for 6 years and don't recall a time where I have seen so many in fragile health or go status and die.

It seems to be an unusually high amount illness and death, or maybe it just seems that way because there are so many more people on these forums.

 

[brain]

Birdy:

I don't mean to shock you, but this is
me - now - except I lost 14 more pounds
since this photo was taken from my son's
"new iphone(?)" with a camera in Sept of
2007 ...

Progressive Epilepsy taking its toll ....

Note: This is why I do not post current
images of me, I hate Epilepsy so much
it is so destructive and YES - Epilepsy
can KILL!

 

[Birdbomb]

Brainyack I understand the progressiness of the disorder and how much it drains and changes, needless to say your photo is proof, but several of these people were seemingly healthy and doing okay.

I am just wondering if it's climate change, the planets are in a certain alignment, or maybe it just SEEMS like more are dying. Maybe I am just too sensitive to it right now. Had WAY too many deaths in the past 8 years. I've lost 7 family members, 3 neighbors, 3 friends, 2 pets.

 

[speber]

f**k epilepsy.....

IMO.

sorry for the pseudo-language...it's how I feel bout it.

 

[angel]

IMO.

sorry for the pseudo-language...it's how I feel bout it.

Im sick of epilepsy also.... STRESS i a biggie it seems to set me up for a seizure today ive not been feeling that great... feel asleep and while i was sleeping it felt like i wasnt breathing i woke up scared the s**t outta me..... angel throws her halo for the min.... and have had a headache ever since....the neuro is upping my meds at 50mg a month instead of the 250mg a week that has seemed to help i was afraid today though....
it scares me when i hear about people dieing from epilepsy..... were they taking there meds? what happend?

I know ive talked to a few about herbal things but now im scared to even try that..... because of what happend to Riva.... I really cared for her she was so sweet...
love angel

 

[angel]

Birdy:

I don't mean to shock you, but this is
me - now - except I lost 14 more pounds
since this photo was taken from my son's
"new iphone(?)" with a camera in Sept of
2007 ...

Progressive Epilepsy taking its toll ....

Note: This is why I do not post current
images of me, I hate Epilepsy so much
it is so destructive and YES - Epilepsy
can KILL!

BRAIN you are a beautiful person just you remember that... and smarter than half this earth

BIG hugs!

love angel

 

[RobinN]

This is a side of E that I have not seen before.
I am curious though and wondering if these wonderful people that you speak of have more complicated health issues that never came to the surface before. The seizures were the warning and the cause was just never figured out.
As to why they happen more at this time of the year? Does diet change? Are sweets starting to be added to the diet since the "holidays" are arriving? Are more processed foods being eaten since less fresh food is not as available. Allergies are more abundant.. is there a connection? Immune system lower? Less light, more stress due to winter and all it brings forth...
Just brainstorming...
My daughter seems to be having less.

 

[Birdbomb]

Yeah RobiN, THAT'S what I'm trying to say. It's just so shocking to see so many.

 

[Bernard]

 

[brain]

SOME really Interesting Article Abstracts:



Biorhythmologic Aspects of Seizure Activity

Seizure resistance was minimum in autumn and maximum in winter. Neurons in cerebellar section were most resistant to the convulsive effect of penicillin in autumn and winter and least resistant in spring and summer. Circadian rhythms of cerebellar neuron resistance to convulsants were opposite, which attests to reciprocal relations between epileptogenic and antiepileptic (cerebellar) cerebral structures.

--------------------------------------------

**note - paid services are required to view
full articles below (partial abstracts) **

Annals of Neurology, Vol 47, Issue 2, Apr. 2001

...epileptic seizures regulated in autumn and winter.

6. It is noteworthy that the. peak occurred in autumn.

Some present-day viewpoints in epilepsy

being more marked in spring than in summer and winter, and rising to a second peak in autumn.

7. The disposition to convulsions exhibits daily variations ...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THEN I found something really interesting out
of a very old Journal:

Epidemiology of Haemophilus influenzae type b meningitis in Manila, Philippines, 1994 to 1996
(Original Studies)

Seizure persisted in 9 of the children at discharge, which required continuing ... a peak in winter and in summer19, 26 and a peak in winter and autumn,

 

[Birdbomb]

Thank you Brainy

That may just explain all these sudden deaths and extra seizure activity others are experiancing.

 

[brain]

Well - I hate to be the bearer of bad news,
but 2 more myspacers with Epilepsy, and
plus one more Led Singer with Epilepsy

(Click on Mel's pic to see all that he has done
for Epilepsy in spite of having Epilepsy himself!)



ADD 3 MORE SUDEP!

 

[Birdbomb]

Who is that lead singer?

I've had enough death :giveup:​

 

[brain]

Mel

Click on his image and it will take you to
his page and look at all the stuff he's
done in spite of having Epilepsy himself!

 

[TeeTees]

This is bad ! I'm a li'l stuck for words after having my sz last night, but I'm wondering something else....

....do you think that every time you have a sz, you remove something like a minute / timed period from your life ? It's just something that I've often wondered.

 

[BensalemAngler]

OK Stupid question but how does one die from sz. I am afriad of the answer but I quess to be a good dad I need to know.