accepted into TNS..and brain calcification?

[vapour]

Hey all.

Well its been a long day for me down-town LA by bus and back again. I was in such a rush this morning I forgot meds .. yikes...but Im .. ok'ish

Anyway, I was accepted into the study and I feel really good about myself. I have not yuet been equiped with the system, today was blood tests and a general check-up, going over my medical records and being asked questions abouit my seizures, shown how to keep a seizure diary for them...

In 6 weeks Im going back with my seizure diary and to have them show me how to use the TNS system thingy...w/e lol..

So anyway. I finally saw my CT scan from being taken to emergency back in March. UP until now Ive only had EEG's and an MRI. So I read my CT scan and it said the following... "some calcifictaion of the vertebral arteries"

I asked what this meant and the nurse said its old scar tissue.. I was wondering if anyone else had this show up on their CT scan ?

Also, I read the official EEG report instead of just being told "you have epilepsy..TLE" and there were other abnormalities picked up in other areas of my brain I did not know about...

Here is what confuses me.. all my seizures affect the right side of my body.. and yes left temporal abnormalities were picked up... but it also says this on the assessment at the bottom... "right frontal and right frontol-temporal sharps and spikes"

Sometimes my left side is affected but only in a v minor way... but not while this EEG was being performed that I knew of....anyway.. if anyone can interpret.. go ahead lol

is this suggesting my frontal lobe is affected as-well ?... (( I dont think Im so happy with finding certain new things out today... but EXCITED about the study, I think that counter-acts it.

 

[Nakamova]

You can have seizure-related EEG spikes show up without actually experiencing any symptoms. For instance, my seizures are only tonic-clonics, but the "bad" EEG brainwaves are present even when I'm not having a seizure, even when I'm feeling fine and nothing is going on. The spikes that showed up in your right frontal lobes might indicate some scarring there, but it could also just be generalized seizure activity. It's not something to worry about -- the important thing is how you actually feel at any given moment, not what's showing on the EEG. The

Congrats on starting the study! It sounds very positive, and it's great that you're excited about it. And who knows what your seizure diary will reveal?

 

[vapour]

thanks !. When I was at the epilepsy seminar in november.. this was one of the things that was spoken about and my Neuro was there (not sure whether to call her my old neuro ) and she said it would be good for me to do this.

I gotta say..Im feeling better about things, perhaps because I just need to feel like Im worth something in some-way.. I have been strugglign with self-worth since my diagnosis..and all the seizure....

I did email my Neuro to tell her thanks for faxing the notes.. because I gave her the wrong fax number and they had to quickly re-send them while I was actually there.... the nurse said her receptionist was very nice.. so thats good.....

But now I want to talk to my neuro..about the seizure diary. I got the instructions but since leaving Im not sure if I should count my tiny twitches as a seizure.. or just a predecessor...plus..sometimes I wonder because most my seizures are brought on by stress (apparently) if sometimes its not actually a seizure and just an anxiety attack.. perhaps hard to tell the difference....

Anyway, thanks for your reply ! I am def going to keep you all informed on how this works...I hope that this will be breaking treatment and helpful at some point for all with epilepsy.

 

[RobinN]

vapour - great news! Having HOPE for a more positive future is half the battle.

As far as the seizure diary. I know for me it is helpful to color code the events. Make a key and you will possibly see a pattern occur. Also of course keep notes as to time, length of episode, and other unusual activities that are occurring in your life. That should keep you busy

 

[Nakamova]

I agree with Robin -- color coding can help. Maybe have a particular color for the "tiny twitches"* and another for things that you think might be anxiety attacks.

*LOL, I wrote "tiny witches" at first. People with E have a lot to deal with, but as far as I know, tiny witches are not a common symptom.

 

[Rae1889]

Yes!

:roflmao: at tiny witches! Occasionally my little lights that fly around in my line of sight I called faeries. Which I am now going to call tiny witches! Cuz that is so much funnier