I am video recording my journey

[vapour]

Hey all.

Wanted to share what I have currently started doing.

I have decided to video record my journey.

So far I have recorded myself having simple partial seizures by leaving it running on the coffee table... they also progressed to a complex partial.

I am doing a little introduction on how I came to be diagnosed, why I am now living with friends due to the expense of medical treatment and an explination of me being on and off lamictal .. etc..why I was refered to psych UCLA after being in the psych ward etc

I am now recording my conversations on the phone with UCLA psych as part of this journey. Today I will have a conversation with the Dr there regarding whether or not they are going to prescribe me my medication which is also used for mood...which is why I was orignially put on it.. and their new excuses of ... they dont want to prescribe me these medications becuase my neurologist also uses them for seizures and they dont want to be responsible etc.... (ridiculous) and their other excuse in the past which they now deny (I will try to get this out in the conversation) that I can only see one doctor.

I left a message today asking for an asnwer this week whether they will take me there as I have 2 weeks left of meds (I think roughly) and will need to wean off these...but hey.. they MIGHT just MIGHT take my case on.

I see my neurologist on thursday and will talk about this...hopefully I will have an answer before then so it will be a more productive app... I may record this.. or I may just record the notes she types up afterwards if she doesnt want this.

I am recording all discharge papers.. etc.. everything.

If I am not longer treated with medication I will record my ER trips....and how the seizures progress. I will also record my diet.

I am also recording the emails I got from the UK from my old GP about the health care there.. how I will have to wait 4 months for a neurologist... and how we barely ever get to see them.. waiting lists for EEGS etc.

If anything (prays not) happens to me, I would like all these videos to be released to the public.

I have what people consider "psychic" seizures when I have a complex one. At the very beginning of the year when my epilepsy only affected me when I was falling asleep or waking up...I had a sensation come over me one day that I was not goin got make it to 2010. I brushed it off.. thought it was crazy.

As the year has progressed and these things are falling into place, I am wondering if this seizure I had was infact a psychic seizure, and its one reason I am video recording my journey.

[Rae1889]

where can we view the video?

[vapour]

I will put them up on youtube. I have an account there I made ages ago that taped one seizure... I will try and get my username nad password found so you can see that one already.

That was hard to do because I used a webcam program so the quality is not that great and its kinda boring.. I was having some simple partial seizures with leg jerking.. had the aura and was just waiting for it to jerk lol

Let me see if I can figure that out now... hold on.

[vapour]

http://www.youtube.com/user/4ReasonBeing

thats my channel with one vid already up from a while ago, you can also see the gross bruise I got from having a leg jerk and falling.

[Nakamova]

Hey, I hope you didn't have a psychic seizure! Look forward to 2010 and beyond, okay?

[vapour]

i hope so. If you have a youtube acc subsribr to me, i hope to add these new videos soon... and if you dont.. go look at my 2 vids anyway.

[Nakamova]

Yup, I took a look. Never thought to photograph my bruises before -- I've had some lovely ones, with all the colors of the sunset...

[RobinN]

Might I suggest that you go talk with the EEG Institute. Tell them that you are a member here at CWE, and see if they can offer you any help. They have some interesting services and it might be something they are willing to take on.

[vapour]

thank-you so much Robin. I just chekced out that sight, and I will contact them.

My friend who is a re-hab therapist in a hospital is learning about neurofeedback and told me it can be used for almost everything....but I know its expensive to get it...

I will check out this sight more.

In the meantime.. I started the GARD diet, need to make a post about it.

[Meetz1064]

you the best of luck, Vapour. I really do. I will keep an eye on Youtube, also.