Losing Hope

[cannemo73]

Hello,

I have just started managing my brother's care. He is a 33 year old male and he was diagnosed as a baby. Over the years he has been on nearly every anti-seizure medication (and combination) you can think of. Most recently, he spent a week hospitalized through the UCI comprehensive epilepsy program and had his brain monitored.
The findings are that he has poorly localized seizures that originate somewhere in the left central region of his brain but they propagate to the right side very quickly. From what I can understand this makes them more dangerous, this is a sign of a bad seizure. Due to the poor localization he is not a candidate for surgery. And to review medication does not seem to work. He has 'drop seizures' where he just falls over with no warning. He is 6 foot 3 and has been injured a lot, at one point he almost died due to the brain injury he sustained after a fall. 3 days ago he fell and nearly lost his eye and had ten stitches in his head.

He is losing hope and has become depressed. I dont know what to do.

Carrie

 

[Melpier]

Never Lose Hope

I've had seizures since early childhood. In The late 80's I saw a "20/20" about brain surgery. in '98 my mom finally let me bring it up to the DR and because of all the meds i had been on he went for it. I went through all the testing plus some (my face moves so much during seizures that they used botox to put the inerfering muscles to sleep)and the redid the first test. I went through the electrodes on the brain and then was told i was not a canadate. At that time i was 19 years old. I'm in the midst of a med change right now. It's not easy but We cant give up hope. I was talking to my nurse earlier this week and i have also been on almost everything. they are putting be back on something I was on 15 - 20 years ago. Im also on Vimpat which just came out last month but i dont know if he would be a canadate for it.
He's not alone. Tht's why I , in the past few months, have grown to love this site!

 

[alivenwell]

Your brother is SO lucky to have you available for help and understanding. Does he have a seizure alert pet? Pets are highly therapeutic with unconditional love.

Keep hoping for him. I was probably just as bad as he is now at one point. My stress level is a huge factor. Lack of sleep is a huge factor. Some people believe certain diets are necessary. Try one thing at a time until the seizures are stopped. It might be a good idea for him to pre-count medication. Also, I personally feel highly in favor of brand-name only medication. Anything else is messing with a breakthrough seizure.

When I finally figured out what triggered seizures, I really tried a lifestyle change. I have been seizure-free for approximately 10 years now. That was unheard of in the past.

 

[DayDreamer]

My quality of life seems to improve with a sense of independence. I enjoy having peers to be equal with and compare my situation to. I know my health is not the best, but I still have much to be grateful for! It is also good to feel useful in life. Almost anyone, regardless of their health situation can find some responsibility to boost their morale: volunteering, online school or work, .... I am volunteering and still have a friend from an epilepsy support group among my other friends and family. Being dependent on others is my most hated factor of epilepsy. Family and friends are my happiness. I often feel bad for my dependence upon them.

 

[RobinN]

My daughter has done Neurofeedback therapy, and I highly recommend it. In addition making nutritional changes has also made a huge difference.

Check out the video that I just posted. Pretty awesome with great HOPE for many.