Just Joined - from Downunder Australia

[Aussie69]

Hi people my name is Christopher.
As mentioned in title a born and bred Australian.
Bit nervous on using this forum as I've always told myself not to join a forum because I consider myself a bit shy and consider best always have a talk face to face. This I know is not practicle. Have used a computer extensively for 15 or so years I never wanted to touch forums. I guess I now know there is a forum which I may gain some true benefit as I myself am epileptic of the complex partial type.
Have had it for the past 25 or so years and unfortunately have not found a drug that has helped me out. I think my Neurologist calls it the uncontrolled variety.
So hello people

[Nakamova]

Hi Christopher, welcome to CWE!

We have a few other Aussies as members too. I think at least one of them was considering neurofeedback to try and control his seizures, since meds weren't doing the trick. You can read about neurofeedback at this link:

EEG Neurofeedback

Feel free to search for info in the archives using the search tab at the top. The members here represent a vast resource of experience, as well as a community of support.

Best,
Nakamova

[epileric]

Welcome Chris,

I know how you feel, I never used to like forums either for the same reasons. This is the only forum I belong to but here there are times you can't shut me up.

The good part is, if you are uncomfortable you don't have to say anything & nobody's going to wonder why you're so quiet.

My seizures are also uncontrolled. Was born with them & after 50 years we still can't figure out how to lessen them.

[Aussie69]

Welcome Chris,

I know how you feel, I never used to like forums either for the same reasons. This is the only forum I belong to but here there are times you can't shut me up.

The good part is, if you are uncomfortable you don't have to say anything & nobody's going to wonder why you're so quiet.

My seizures are also uncontrolled. Was born with them & after 50 years we still can't figure out how to lessen them.

Thanks - Just wish I knew what does what and how you perform a simple reply. Hopefully I have done the correct thing in doing so here.

[huskymom]

Hi Christoper!

Welcome. I joined fairly recently myself, and I want to tell you that I have learned a lot. Also everyone here is great. You can rant or just chat or get advise. No one here will judge you or say your nuts. Not like in the real world

[travel bug]

I second what huskeymom said I'm even newer than huskeymom, about a week, and I've already learned a lot. The people here have all kinds of experience and ideas

I'm shy too, but I've found that friendly forums can really draw you out. And this one is a great place to start, everyone seems very nice and supportive

[zada]

Hi and welcome Im also from Aust and suffer complex partials

[Bernard]

Hi Christopher, welcome to the forum.

This medium is like having a face to face conversation, except that you can't see the people you are talking to and everyone can contribute on their own schedule (and no one can interrupt you when you are composing your message).

Meds not doing the trick? Suggest reading here: Proactive Prescription for Epilepsy

[RobinN]

Hello Christopher - Welcome to CWE

I am glad you decided to join. I use to be the shy and quite type, however I find it much easier to speak my mind, and think twice before allowing the words to be heard, here on a forum. You can see from the number of posts I have made that I am far from quiet now.

My daughter is the one with the seizure disorder. We did not find meds helpful. In her situation they were actually harmful. We have found ways to control her seizures by making nutritional changes.

I hope you find the support you are looking for here.

[knothing]

G'day mate!

Welcome to a place where many others understand where you are coming from (not just Australia obviously)

[sandi]

Welcome I know that in some cases meds are different in other countries.
What have you already tried?

[Endless]

Hi, Christopher,

Welcome! I'm glad you found us!

I think this is the best forum out there. Which is lucky, because at the time of my diagnosis I was on Topamax which really made me confused and this is the only forum I could figure out how to use. It's also the easiest forum out there. lol....

[dfwtexas]

Welcome, this group is a Godsend for me. I even have met someone on here that I have gotten together with! I tried finding a support group in Dallas, there is one that meets one night a month (and I don't drive at night!)...this is a great group of supportive people....I have learned so much here! We do have Aussies, too.
jenn

[KellyD]

Hey there! I'm in Qld and also have complex partial seizures, as does my son. This site is great for support and info so glad you found it. What part of Australia are you in?

[Aussie69]

Thankyou people for making me feel welcome and giving me confidence in using a forum. I am sure you will help me and hopefully allow me to help people in coping with this demon we and our familes must live with called epilepsy.
I have read many of the stories of people and their families discoveries and coping abilities and found many of them much like my own.
Mine was first discovered on the sporting field as an Aussie Rules Footballer. In a game of rough and tumble where the object of the game was to gain possesion of the ball at the peril of you're opposition I would simply stare into space and do nothing. Knowing something was of obvious wrongdoing my coach informed my parents of what was going on. Having been referred to a neurologist and going through all the tests we must go through Epilepsy was
diagnosed. At first the belief was of it being caused in the temporal lobe. Having gone through a 2 week monitored EEG the belief now is the occipital lobe is the problem. Unfortunately they have told me surgery would not be a good option as this is crucial to one's sight and blindness maybe a consequence. So be it, I have accepted it's something I must deal with as fact.
I currently am on Tegretol 800mg, Dilantin 600mg and recently have had Vimpat 200mg added. A drug that brought me here in answering some of my questions and very helpfully answered.
Others I have tried include Keppra, Lamotragine, Neurontin, Sabril, Mysoline, Epilum, Topomax, Lamactil and Trileptal. Have done about 5 trials since 2002 too.
Suffer both day and as of about 8 years ago Nocturnal seizures.
For me, biggest triggers are catching bright light at unexpected times. Camera flashes and the color red can be hell too. Morning times are generally the worst as the eyes need time to adapt. i.e Photosensitive.
For myself, the big query is Cigarette Smoking. For some reason when I have a seizure, I light up and smoke a cigarette - public places which prohibit smoking and probably most dangerous - in bed. No recollection obviously of what has happened upon waking up.
Have taken video footage of this and passed it onto my doctor with no explanation of such behaviours.
Does anybody suffer such behaviours or anything similar? Something automatic when entering a seizure.
Yes! I know giving up the habit should be performed. Have in the past and began lighting up pens & pencils.

[Aussie69]

Gd'ay KellyD - Live in Adelaide Town

[dfwtexas]

I got diagnosed with simple and complex partials about 2 1/2 years ago. I have been on Keppra, although my levels have to be adjusted several times. I am praying it is good now. I had a simple in March and haven't had complex since October!
I know what you mean about the cigarette thing. Before I got diagnosed and knew what was going on, after my seizure, my post itical put me doing strange, even dangerous things. I never knew what I was doing and have no memory. When I came out, it was not unusally to have a cigarette burning out. Back in the beginning, I would have them at work or in car a lot. I would remember sitting in Dallas traffic and next thing I knew I was just driving in my neighborhood. The last time it happened, I went down a one way street wrong way and when I came out, there was a commuter train coming at me. I went to doc the next day.
Some times it is just nice to come on here and know this is stuff is par for the course to E. My E is related to a trauma injury to my arm in a freak accident. I had multiple bacteria infections and was on IV meds for 2 years. Docs think it was infections, meds or combination that created the E demon for me. I have told my friends that I have learned to deal with my limitations of my arm, because I know and the biggest problem with E is you never know when it could hit. I have to say the wonderful people on this forum have played the biggest part of me getting to a place that I don't feel like a freak. I just took my first plane trip since my E diagnosis and I know 2 years ago I could have never have done that!
jenn

[Nakamova]

Automatic movements that are seizure-related are often activities that have been deeply encoded in the brain. The regular motions of lighting up a cigarette can be one such pattern. The cigarette-lighting motions probably get more easily hard-wired due to the other sensations involved — the anticipation, the smell, etc. Not sure how you would "unlearn" this motion -- maybe by replacing it with something similar but benign, like knitting or doodling. Or maybe neurofeedback could help. Of course, quitting smoking would be a plus, since nicotine is a stimulant that can trigger seizures (not to mention the other health benefits that would result ).