Hiya

[graceface]

Hey All!

My name is Grace, I've been browsing through the forums on and off over the years but felt disconnected from what was being written, a lot of the posts i recall were quite depressing (circumstances, deaths etc). But after I hit a bit of a wall recently I decided to revisit and see if I could seek out some positive info and support.

My background: Grand mals and partial seizures. My epilepsy began when I was 14 years old, I had an eating disorder and I believe the physical strain of not eating for two days onset my first grand mal seizure. I have had epilepsy since then. I was on medication from about 16 until about 22, non of which did much of anything. I was taking epillim and they increased my dosage over the years, eventually my doctor wanted me to take some other medication as well as the epilim.... the side effect of the new pills was "suicidal behaviour" I said that's an effect in itself it's not a side effect, so i refused and decided to get off epillim because i felt it was pointless putting a chemical in my body that did nothing.

I'm interested in looking at alternative therapies, I know my epilepsy is on set by stress. I've tried some naturopathy hopeful to manage my life and epilepsy but more recently things have hit a wall. The last three days in fact I've been stuck in this awful "pre-seizure" state, normally i will have a pre-seizure and then have a seizure or get the pre seizure feeling and relax myself through it, this has been ongoing for three days. Its a constant state of discomfort, not complete focus, de ja vu, waves of stronger pre seizure feelings. Ive been to hospital and they ran some tests n sent me hm, I will see my gp and neurologist next week. and thats where I'm at.....

For me, at the moment I feel like noone has any answers. I feel like I'm at a real low point with my epilepsy, I mean of course the circumstances right now that I can't leave my house(this hazy pre-seizure thing) but also just my epilepsy overall(aside from this weird feeling), in the last six months I've stopped uni and basically everything i was doing. My epilepsy is making me feel disabled which is hard because I'm a very passionate strong willed person...

Some plusses, what i love ... the arts!!!!! all things art, well my main passion is theatre(management and casting surprisingly, dabbled in acting but the other side is for me).... but i am interested in all arts, installation, visual arts, performance, circus, theatre, music, dance or otherwise, just all things creative

So im not completely negative, Im actually light hearted, really passionate and generally have a zest for things, just in a sticky spot and am not sure what to do. So I'm starting here as part of my research health wise and also to hopefully meet some people who feel something familiar. I have great family and friends but i feel so disconnected from them atm, be nice to meet another average in ya 20's art student that knows what I'm feelin

look forward to expanding my knowledge and meeting some new peeps
- G

 

[Chaz1]

Hi Ya Grace,

My Son 26 has E and T/C and partials galore; he was diagnosed with E at 23. He is studying (media and entertainment) and working. He has voiced that E is not going to beat him; he is not scared of it and not ashamed of it. Has had T/Cs day time on the job, in bed, in a chair, at this stage it’s a u name it he has had one. We can put his T/C trigger down to stress nearly 100% of the time at this stage. He had a run of breakthroughs in past 7 months after long period of control then he was having T/C at 2 week intervals, and this week he just passed the 5 week seizure freedom

It was browsing this site that gave me hope and a bag full of alternative options to try and we sure have been doing that.

Now each body is unique, but this is what we have tried so far and currently still doing.

In conjunction with meds which is Valpro 1300mg, seriously excellent diet, organic where possible and cut back on dairy, he takes Fish oil and must be excellent quality (said this helped to lift and keep depression at bay) Vit E (antioxidant), Vit D (meds can deplete this and on last check his D levels were excellent), B complex (known as the happy vitamins).

He is also in therapy (which does wonders as he can vent, because though surrounded by loved ones, sometimes a third party can really let u get it all off your chest) AND Neurotherapy/Biofeedback’, in this therapy his EEG showed hyper alter mode in an area of his brain that they are training down and they can see on the spot if his emotions are running wild and train on the spot to reduce stress. It has helped in so many ways, its teaching him to modify his brainwave activity to improve attention, reduce impulsivity and control hyper (active) behaviors. We are seeing so many benefits to this training and I found information on this here on CWE!!!

Please do really explore CWE site, there is so much HOPE. Yes not all is happy stuff but hey, I for one am soooo grateful to this site, for those that need to vent (me too) have a place to do so and a listening ear and a response from people who relate, understand and care…

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Warm welcome to CWE…!

 

[Chaz1]

And a GREAT read is Robin (Mother) and Rebecca’s (daughter with E) journey..

http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

 

[julie wishes]

Sounds to me like you need to stabilize on meds ( a different one that works) then ween off onto the natural remedies. You have to get past this storm first. Seems like most people really need the meds. But exploring to find the right ones can be quite difficult.