my story and questions. 
erin_c
22 y
1,673
i'm fifteen years old and live in australia. i've had epilepsy for about three years, i think. although i could be off by a year or so, i'm fairly sure my first seizure was in december of 99 or january of 2000, after a night entirely without sleep. i don't really remember. i woke up later on and went on with my business. next thing i know, my parents are telling me i just had a seizure and i need to go to the doctor.
for about... two years beforehand (roughly the time i hit puberty), i'd shown symptoms - namely a tendency to drop things and be unco-ordinated first thing in the morning. however up until this point, we didn't know i was epileptic. the doctor i went to the next morning took an ECG test, said nothing was wrong with my brain and we let it lie.
since then i've had a few seizures - 7, as a rough number. they apparentely occur when i have disrupted sleep patterns, but often if i have a big weekend and don't sleep for a couple of days or whatever, i won't have a seizure for at least two weeks afterward. my most recent one was three nights or so ago. the night before i had been getting bright, flashing colours in my vision although nothing happened. the next night it came on much stronger and i called out to my father before lapsing into a seizure. i only ever have them when i've been sleeping - they don't just occur out of nowhere at school or anything, although apparentely i also have absence seizures on occasion.
for a year and a half or thereabouts, i've been taking Epilim. i hate it. honestly, i'm delibretely a little slack in taking it, because i hate the way i feel when on it. sometimes i think i'd rather have a fit than feel as listless and unattached as i do thanks to the medication. maybe this isn't the most healthy attitude to have, but honestly, i know this is contributing to me not achieving as highly as i should be. although my underachieving is partly due to lack of motivation, my medication is a definite factor. considering how hard i have to work next year to get the marks i need, i really can't have something this major as a deterrant.
has anyone here had a similar experience? how did you/do you deal with it? are there any remedies and/or medications you recommend?
thanks,
erin- Re: my story and questions. Kathy
22 y
1,682
This is a reply to # 55,906Hi Erin,
You know whats the cause as you said, NOT SLEEPING or lacking alot of it and you not wanting to take the toxic meds, is understandable, BUT as the old saying goes for those w/weight problems "You can't have your cake, ice cream and eat too" and cry about how you can't lose weight.
IF you don't want to do the meds as I stopped mine, I chose to search for cause(s) and sacrificed the irritants/triggers to stay off my meds and have sz control much of the time and a now Quality of Health and Life. You knowing that lack of sleep is your trigger you can't keep depriving your poor tired brain of sleep, or sz hell will keep returning! Hope you can handle it.
Sincerely
Kathy - Re: my story and questions. #163918
21 y
1,447
This is a reply to # 55,906Hi Erin,
Yes, My boyfriend had been suffering from aura's and seizures for a long time. No doctor could figure out why. We did our own research and found out what was causing it.
There is a toxin being added to foods called MSG. It causes a wide range of health problems including seizures. It is hidden in almost everything you can buy at the food store.
I suggest you look at this website: www.nomsg.com. I also suggest a book called "MSG:The Taste That Kills." You can also do searches online under "MSG, Dangers & Heath Risks." Learn everything you can about MSG, because keeping it out of your diet could save your life.
Since we learned about this and cut it out of his diet completely, my boyfriend has been aura and seizure free - no medication.
Learn about what you are eating.
I hope this helps,
Jennyone - Re: my story and questions. UserX
21 y
1,603
This is a reply to # 55,906a) Dr. Christopher's B&B formula. go to www.drchristopher.isbrilliant.com
Select Dr. Christopher from the drop down menu and find the B&B
Also, I have Dr. Schulze talking specfically on Epilepsy on my webpage. Its under the Uncurables discussions - mp3 and a .doc file - Re: my story and questions. waterlogged
20 y
1,654
This is a reply to # 55,906Dear Erin: I can understand you not wanting to take meds that don't make you feel right, but please think for a moment that the condition you have can be very serious, especially if you tend to have them at night when someone may not be there to assist you if needed. I lost my 17 year old son the day after Thanksgiving of 2002, just 1 1/2 years ago. We didn't even know he had the disorder and had never seen any unusual behavior with exception to an incident a week prior to his passing. He woke with a sore tongue and when he showed it to me I saw teeth marks on it. I took him to the doctor and he sloughed it off like it was a fluke. He never even mentioned the possibility that it could be the sign of a seizure and we left the office that day with a false sense of security. I lost my son exactly one week later. He never woke up the day after Thanksgiving. He had been up until wee hours of the morning playing video games with his brother which I feel strongly triggered the seizure. Since the passing of our son I have read everything I can get my hands on and one thing I know to be true is lack of sleep can definitely be a trigger for someone with this disorder so please be pro-active in your own care. You can always try different meds, but please, please don't stop taking the meds without talking to your parents or your doctor and you need to take your lifestyle very serious. I didn't share my story to scare you, but to educate you as most medical professionals never tell a patient that seizures can cause death. I will wish the best for you and sorry to hear you have to suffer with this disorder. Take care!!
- Re: my story and questions. Kathy
22 y
1,682
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