- Intracranial Hypertension
- Interviews
Rebecca's interview
How did all start?
On my 34th birthday in April I woke up at 5:15 with a slight headache, went back to sleep and then woke up half an hour later screaming as my head was exploding. I couldn't move by myself, I threw up from the pain and my other half phoned 111 - they told me to go to A&E.
Do you already have a diagnosis? How long did it take you to get it?
My first diagnosis was Migraines but the headaches didn't stop. I was readmitted to hospital in August and a wonderful neurologist suggested trying a lumbar puncture... Boom. Headache cleared and diagnosis in one.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology.
What has been the most useful thing for you so far?
Therapeutic Lumbar Punctures. Even going through the pain of the low pressure headaches afterwards is worth the few days of clarity.
What have been your biggest difficulties?
Explaining the condition to medical professionals. There needs to be so much more education.
How has your social and family environment reacted? Have your social or family relationships changed?
Confusion and anger when I have to cancel so many events. Every one is constantly worried about me which means I don't talk about the pain I am in anymore... So people think it doesn't exist anymore.
What things have you stopped doing?
I had to leave choir as it is too much pressure in my head, I had to leave a job I loved, I have stopped going out and seeing friends as much.
What do you think about the future?
Terrified. My IIH went into remission for a few months and I "just" had Chronic Migraines for them. However, in the last two months my pressure headaches have returned. I am genuinely scared.
So far, which years have been the best years in your life? What have you done during them?
Weirdly the last few years have been the best. I got married to the greatest man of all time, we released a book, and we both got jobs we enjoy. My condition stops us doing a lot but we just love being together.
What would you like to do if you didn’t have your condition?
Sing. I miss singing so so much!
If you had to describe your life in a sentence, what would it be?
Geeky chaotic woman walks dog and loves husband whilst thinking about Excel spreadsheets.
Finally, what advice would you give to a person in a similar situation?
Find your one thing of joy that gets you through the day. The doctors and the pain and the pills and the procedures are all external to you. There is hope. Find it and hold on.
Also fight.