persevering and happy

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Ondreianna

Ondreianna

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Howdy,

So....introductions, right. Ok, well long story short im an enigma that no one as of yet can figure out. I had my first grand mal seizure at the age of 4 or 5. And was finally actually diagnosed at the age of almost 17. Ive been through a lot of tests and diagnoses and have finally reached an ending. My doctors decided to stop seeing me on account that i was "untreatable" "undiagnosable" and terminal. They gave me 8 to 10 years. Now as time has removed me from that year i dont believe a single letter of the terminal diagnosis, they really didnt know what they were doing with me. A few teams of doc (cardios, neuros, and epi) sat and argued about my diagnosis infront of my mother and i while i was in the hospital for the 3rd time. lol

Anyway after i got dismissed i stopped taking my meds. Had a relatively bad year and finally got a bit better. ive been off meds now for about 3 or 4 years (my memory's timeline is a little rusty) and doing pretty good. :) I only have about 3-10 seizures daily and only 3-13 grands (or similar severity) per year! :) Im starting grad school in the fall to become a psychologist and than in Dec ill be getting married to a wonderful understanding man. Im currently doing research into natural and homeopathic aids for seizures.

I dont have a lot of time because of school to be on message boards but i do miss them terribly (mine shut down a year ago).

Good to meet all of yall.
God bless.
 
Hi Ondreianna, welcome to CWE!

You sound like you are in a good place. Meds and doctors can cause a lot of frustration, and if you feel like you can cope without them, more power to you! Definitely check out the link Phylis posted above -- there are a lot of good ideas for alternative approaches to seizure control, including diet and neurofeedback. I hope your seizures remain stable. If they seem to be escalating in frequency or duration, pay attention -- that's a bad trend, and an indication that you should consider another approach.

Best,
Nakamova
 
Hello and welcome.

Ondreianna said:
I only have about 3-10 seizures daily and only 3-13 grands (or
similar severity) per year!
Click to expand...

I am no expert or neuro but based on my experiences, that number sounds high. I used to average about 1 to 2 grand mals per year when I was not on meds.

If you are adamant to stay away from meds, (i can understand why, i hate what they do to me), but at least you may want to look into the alternative therapies as posted earlier. They may help reduce the grand mals.

Best of luck....
 
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Ondreianna - I am glad that you have found a place that works for you to improve the quality of your life.
We also went against the mainstream, and denied further "testing" with medication. My daughter tried four, and we now are controlling her tonic clonic seizures with nutrition.
Is it possible that you have a nutritional sensitivity. I doubt that was a concept back when you were making frequent visits to your doctors.

Congratulation on your upcoming wedding. I am glad that you joined us here.
 
Douglus- Yeah i guess it does sound high. when i was first diognosed i was having upwards of 30-50 absent seizures a day. hehe so i cant complain too much. :) every drug with the exception of keppra and zonegran messed me up. and plus with the fact i cant keep a doctor, im scared to take anything. I will indeed check out the alternatives.


RobinN - Im glad the alternatives have worked for you daughter. I will def look into what yall have suggested. My future mother in law isa homeopathic pharmacist to i might be able to get checked out for nutritional sensitivity from her. You are right that it was not an idea that they gave me. I only recently found out about some of the things i should avoid from my own research and my future mother in law. So now i avoid (as much as possible) preservatives, MSG, pork, and artificial sweeteners.
 
You are a lucky one. That is one MIL worth her weight in gold. I would continue to do your own research, but it will be great to discuss your findings with her.

What I have found... the more I remove the more I am sensitive to, when it is in food I am unaware of. Read all your labels, and find alternative products if necessary.
 
PhylisFeinerJohnson ーThank you very much for the link i will check that out. :)

Nakamova - Thank you! for the most part my seizures remain somewhat stable. There are always changes in correlation to sleep, stress, and ive noticed some food and alcohol will also make a difference. caffeine helps alot though for some reason.
 
RobinN said:
You are a lucky one. That is one MIL worth her weight in gold. I would continue to do your own research, but it will be great to discuss your findings with her.

What I have found... the more I remove the more I am sensitive to, when it is in food I am unaware of. Read all your labels, and find alternative products if necessary.
Click to expand...

hehe i agree i think she is pretty great too!
 
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