Tell us about yourself?
My name is Tiffany and I am based in Houston, Texas! I love to color, I have all of these amazing markers right next to my chair and sit there for hours just coloring. Brain training games are another favorite pastime for me, they help stimulate my brain and memory, so I really enjoy playing them. My husband and I love to cook together too!
Learn more: Epilepsy and memory loss
Tiffany's epilepsy journey
I had my first seizure in 2005. I was still working at the beginning but I kept having seizures, so they sent me to the hospital. At the hospital I was told I have another brain lesion and blood clots. Honestly, I was thinking “Jeez, what is happening?”.
That’s when I began trying alternative treatments. I have had 3 brain surgeries since this time, 2 surgeries were completed prior to 2020. Then, in 2020 I had an RNS implanted. I had a stroke and they found more blood clots in April 2021, I was very unwell. I went from 160 to 116 pounds. After this, I had my third brain surgery. I saw an epileptologist who removed part of my left temporal lobe. They are shocked I can even talk following these surgeries. Previously, I had a wheelchair, but I have now graduated to a rollator!
What support do you have?
Honestly, it’s been very hard to get support. My Dad and his girlfriend, Kim, are the most helpful! Kim has been through cancer herself so is very supportive. I have a journal where I write down everything as my long term memory is there, but my short-term memory is not.
I have physical and occupational therapists who come and help me do stuff regularly which is great too.
Find out more: How to find epilepsy support groups
Experience with doctors
It’s been very hard. I have been shipped around several epileptologists. The hard part is that you can get to know one doctor and they learn about medications that work for you and then you get moved on. My family practitioner has helped by giving me just the one doctor now, and they are highly recommended!
Using the Epsy App
I use Epsy to write down everything, to the point of if I have had a good day, what happened in my day, what I ate. Logging seizures is great too and the medication reminders help me remember to take my medication on time. I think it’s a wonderful app! Being able to keep track of side effects to inform my future treatment decisions is also really beneficial.
Advice for other people with epilepsy
You can still survive and you can still be happy! You learn to cope. When I had brain surgery, they had to shave my hair bald. I was worried but then everyone just said I looked great!! You realize it will all be OK, it is part of who you are and God has got a plan for you.