Hi all. As I mentioned a coupe of weeks ago, I went to the annual epilepsy confrence this weekend in down town LA, where there was a board of awesome neurologists (includig mine) to present topics and answer questions.
I wanted to share some of the things I learned about.
One of the things we learned about was Mindfullness, which in short is a form of meditation. It helps you relax by taking your mind off past and future and the strings of thoughts that arise in your mind onto the present and very simple things.
For example, you simply focus on the now. We had to close our eyes and feel our feet touching the floor, how it felt,...then our buttocks touching the chair.. how tht felt...and so o and so forth... its becoming aware of the very present thing, and it actually really helped me relax !! Its a great exercise.
A social worker also spoke about taking care of ourselves. I could totally relate to her experience in talking to others with epilepsy about hte anger you get after a seizure in the day, and the anger at having to pace yourself slower etc.....and the inner dialogue that goes on in our head.. and to be aware of that,,, and to try and make it positive. (not as good at explaining as they were sorry) but here were some questions she challenged:
Am I taking care of the basics ? (sleep, rest, diet, exercise)
What do I think I need to change ?
What have I done in the past ?
What is my support system?
DO I know how to ask for help?
What do I do to cope with hard times ?
WHat is my inner dialoge ?
Who could I talk to about what Im feeling ?
How can I connect with others in teh same situation
We also spoke about depression in epilepsy and how its grossly un-recognized, and how people with epilepsy have 5x higher suicide rate than the general population, and that if you do suffer from depression to speak with your Neurologist or psychiatrist and get them to work together and not to suffer in silence. That depression does not always present in the typical way
There was much more, but too much for a post. Ill lastly touch on TNS..Its basically a developing treatment still in testing...where you put 2 little electrodes on a nerve that goes across your forehead. Apparently this nerve is some-what responsible for sending signals causing seizures. This treatment aims to stop those signals with the electrodes. So far its had almost 40% success rate in patients with epilepsy. UCLA and USC are doing more studies on it, and my Neurologist told me to call them up.. becuase I meet the criteria and to see if I can get involved...
If its successful for you.. apparently they will implant the electrdoes under your skin....
I called them up this morning and I am expecting some consent forms through the post now..will let you guys know what happens with that. I have never heard of TNS I am trying to find out more.
I wanted to share some of the things I learned about.
One of the things we learned about was Mindfullness, which in short is a form of meditation. It helps you relax by taking your mind off past and future and the strings of thoughts that arise in your mind onto the present and very simple things.
For example, you simply focus on the now. We had to close our eyes and feel our feet touching the floor, how it felt,...then our buttocks touching the chair.. how tht felt...and so o and so forth... its becoming aware of the very present thing, and it actually really helped me relax !! Its a great exercise.
A social worker also spoke about taking care of ourselves. I could totally relate to her experience in talking to others with epilepsy about hte anger you get after a seizure in the day, and the anger at having to pace yourself slower etc.....and the inner dialogue that goes on in our head.. and to be aware of that,,, and to try and make it positive. (not as good at explaining as they were sorry) but here were some questions she challenged:
Am I taking care of the basics ? (sleep, rest, diet, exercise)
What do I think I need to change ?
What have I done in the past ?
What is my support system?
DO I know how to ask for help?
What do I do to cope with hard times ?
WHat is my inner dialoge ?
Who could I talk to about what Im feeling ?
How can I connect with others in teh same situation
We also spoke about depression in epilepsy and how its grossly un-recognized, and how people with epilepsy have 5x higher suicide rate than the general population, and that if you do suffer from depression to speak with your Neurologist or psychiatrist and get them to work together and not to suffer in silence. That depression does not always present in the typical way
There was much more, but too much for a post. Ill lastly touch on TNS..Its basically a developing treatment still in testing...where you put 2 little electrodes on a nerve that goes across your forehead. Apparently this nerve is some-what responsible for sending signals causing seizures. This treatment aims to stop those signals with the electrodes. So far its had almost 40% success rate in patients with epilepsy. UCLA and USC are doing more studies on it, and my Neurologist told me to call them up.. becuase I meet the criteria and to see if I can get involved...
If its successful for you.. apparently they will implant the electrdoes under your skin....
I called them up this morning and I am expecting some consent forms through the post now..will let you guys know what happens with that. I have never heard of TNS I am trying to find out more.
(((( need a hug.. sniff sniff.