- Intracranial Hypertension
- Interviews
deni1342's interview
How did all start?
Attended a seminar and had a headache the whole day. When driving home that evening my vision got blurry and became tunneled. I went into Urgent Care where I was checked for neurological issues. The next day I saw a Neuro- ophthalmologist who gave me multiple tests then ordered a brain MRI. After the MRI confirmed papilledema a lumbar puncture was ordered for a couple weeks later. The pressure was measured at 26.
Do you already have a diagnosis? How long did it take you to get it?
The Neuro-ophthalmologist had a tentative diagnosis at the initial visit but did not want to confirm it until the lumbar puncture. So in total, 2 weeks.
What have been your biggest difficulties?
The side effects of the medications have been causing daily life to be difficult. I have a toddler and I am supposed to be working full time so it is hard to suffer the side effects.
How has your social and family environment reacted? Have your social or family relationships changed?
My family and work have been supportive. They all want me to become well enough to be somewhat normal again. I can't do many things that I used to do but I try to make do.
What things have you stopped doing?
Working full time, full day chores/outings/hiking/etc
What do you think about the future?
Is the disease going to get worse? Am I going to have to get surgery? Will my daughter get this?
Finally, what advice would you give to a person in a similar situation?
Find a good neuro-opht!
