- Intracranial Hypertension
- Interviews
Shalisa's interview
How did all start?
I have had migraines since I was a child. About 8 years ago I had my eyes checked as I was getting headaches/migraines more often. It was then that the eye doctor suggested there might be something wrong. However I was in college, raising a family, and about to start my career as a teacher. Last year I began to feel off balance. Like the world titled the ground below me, I have always had great balance. Went to the doctor and started all kinds of testing. Asked my doctor if what the eye doctor mentioned years ago could have something to do with it. That is when things started clicking. Very quickly I had a lumbar puncture, and MRI. The diagnosis was confirmed I have psuedotumor cerebri.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I received my diagnosis in May of 2017. Took me 8 years to finally know what was going on.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My nuerologist has been the best through all this.
What has been the most useful thing for you so far?
Unfortunately not much of anything.
What have been your biggest difficulties?
I have had to give up so many of the things I like to do because of pain, vision loss and fatigue.
How has your social and family environment reacted? Have your social or family relationships changed?
Socially people look at me like I am weak. I pride myself of my strength, so this aspect is hard to deal with. My husband and children rally around me and reminded d me of the things I can still do!
What things have you stopped doing?
I have had to give up casting for a local haunted attraction and recently had to stop acting for the same attraction.
Being a teacher I have had to learn how to conserve energy and get through my school day differently.
I also had to stop assuming I could do it all by myself.
What do you think about the future?
I hope for a cure.
So far, which years have been the best years in your life? What have you done during them?
The years in which my children were young. Now that they are older and some have moved out I miss all those trips, playing in the rain, hiking to see wild life......I miss being active and out with my family.
What would you like to do if you didn’t have your condition?
Anything I feel like doing. I love to explore new places. I just want energy to go on adventures!
If you had to describe your life in a sentence, what would it be?
"Just living isn't enough", said the butterfly, "one must also have freedom, sunshine and a little flower".
Finally, what advice would you give to a person in a similar situation?
Find a group that will help with questions and let you vent.
