New Kid venting

[Fisheriam24]

Hello to everyone. I never thought of looking for a forum for epilepsy before and you would figure after so many years I would have done it already. I have two different types of seizures. Grandmal seizures and partial seizures. It obviously hurts me to have seizures because it's not something that ever gave me happiness besides... Maybe ohh I made it threw the day or even week with no episodes. Though why in the hell am I having seizures?! I've been to many neurologist before from WVU to Nashville to Army doctors to well anyone I can beg for an answer why. Seems terrible but sometimes I just wish I have a tumor or something to be able to attempt to stop having seizures. My EEG's are constant seizure activity but no pin point or any clue on whats wrong with me. I've been put to sleep then woke up, flashing lights in my face going a million miles a minute, hearing, food, no inflammation, no poison, ph balance is normal, diets normal, no infections, and keeping stress to a minimum but no freakin answer. One of my neurologist told me I'm going to die one day if I don't watch what I do. Like swimming in the pool, taking a bath, being on a ladder, riding a lawn mower and the list continues in front of my husband who had never seen me have a seizure before let alone anyone. Lets say he has been trying to make the house seizure proof and threaten me with a life jacket in our pool as well as arm floaties. NOT JOKING! I just feel like a burden with this "disease". Cyphering threw my horrible grammar and terrible points I guess the question to ask is am I alone on this? I feel alone.

 

[CQ:)]

Hi Fisher ,

Welcome to CWE & you are definitely not alone.
You will meet some wonderful people on here who can offer some great advice & also understand how it can be a pain living with epilepsy.

 

[Nakamova]

Hi Fisheriam24, welcome to CWE!

For the majority of folks with epilepsy, the disorder is "of unknown origin" -- so you're not alone! Especially not here at CWE -- for better or worse, CWE members have seen it all. My seizures came out of nowhere when I was 35. Like you, no obvious primary cause, just lots of tonic-clonics. I've been fortunate that my seizures respond to meds, so I'm currently seizure-free. I hope the same occurs for you.

Even without a primary cause, it's sometimes possible to find secondary triggers that bring on the seizures. It can help to keep a seizure diary to see if a pattern shows up. It sounds like you've crossed photosensitivity off the list. Other things to look for are: fatigue (the #1 trigger!), food sensitivities (caffeine, alcohol, MSG, aspartame, gluten, etc.), low blood sugar/pressure, dehydration, fluctuating hormones, electrolyte imbalance, illness/infection, etc. Things that wouldn't ordinarily be worth considering can become issues once you developed a lowered seizure threshold. I was drinking tons of diet sodas all my life, but after I had my first tonic-clonics I had to be much more careful about drinking them -- the combo of too many sodas plus not enough real food is problematic for me.

I understand your husband's concerns about your vulnerability to seizures -- they are a normal response -- but sooner or later you may need to have a discussion about striking a balance between his protectiveness and your need for a degree of independence. He can't wrap you in bubble-wrap, as much he might want to.

Best,
Nakamova

 

[graceface]

Hey Fisheriam24,

while reading most of that I felt like you were reading my mind!!! i have only just recently come to this forum and it's been a big help in making me feel less alone. Epilepsy can really be a lonely lonely journey sometimes. I really struggle with a sense of independence, I hate not being able to just live my life and do things, like swimming alone, having a bath etc etc it goes on. from the lil I've read round this site a lot of what your saying is familiar for most. Hope you get what I've got out of this place in the short time I've been on it.

 

[Carrie Lynn]

Defintely not alone. I thought I was though. I am new to CWE, kept hoping mine would stop. After I fell (atonic) on porch and broke my elbow I have to face my limitations.
It is hard. I leave door open when showering. Where is dignity? I sometimes cannot speak well enough (sound drunk). Sometimes the paralysis postictal is so bad I cannot move at all, but my ears and eyes work. It is like being locked inside a box sometimes.
Friends here at CWE are worth gold! Good support system. Thanks to all.

 

[Silat]

I just wanted to say hello and welcome!
You're certainly not alone, and I assure you we're all here to support you!
I wish you the best

 

[DadofTwins]

Welcome to CWE

Hi Fisheriam24, welcome to CWE!

For the majority of folks with epilepsy, the disorder is "of unknown origin" -- so you're not alone! Especially not here at CWE -- for better or worse, CWE members have seen it all. My seizures came out of nowhere when I was 35. Like you, no obvious primary cause, just lots of tonic-clonics. I've been fortunate that my seizures respond to meds, so I'm currently seizure-free. I hope the same occurs for you.

Even without a primary cause, it's sometimes possible to find secondary triggers that bring on the seizures. It can help to keep a seizure diary to see if a pattern shows up. It sounds like you've crossed photosensitivity off the list. Other things to look for are: fatigue (the #1 trigger!), food sensitivities (caffeine, alcohol, MSG, aspartame, gluten, etc.), low blood sugar/pressure, dehydration, fluctuating hormones, electrolyte imbalance, illness/infection, etc. Things that wouldn't ordinarily be worth considering can become issues once you developed a lowered seizure threshold. I was drinking tons of diet sodas all my life, but after I had my first tonic-clonics I had to be much more careful about drinking them -- the combo of too many sodas plus not enough real food is problematic for me.

I understand your husband's concerns about your vulnerability to seizures -- they are a normal response -- but sooner or later you may need to have a discussion about striking a balance between his protectiveness and your need for a degree of independence. He can't wrap you in bubble-wrap, as much he might want to.

Best,
Nakamova

:agree:
Please know that you are not alone and will always find help here.

Tom