Sophie's interview
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How did all start?
Severe Headaches while asleep, and very disturbing nightmares. Pain behind right ear, and down right side of body only, pressure feeling in my head all the time, gp stated they were migraines but I had suffered with migraines must of my life and this was different, then I started with the severe pain in the day would come and with no warning or pattern but only on one side. I saw an optician who reported my sight was fine apart from ocular motility revealed jerky eye movements in superior position and referred me to a neurologist as I was suffering with the headaches on this side aswell.
Do you already have a diagnosis? How long did it take you to get it?
After 4 months of agreeing with my gp I finally got a CT head which was clear apart from empty sella, and the radiologist suggested the possibility of idiopathic intracranial hypotension, I was the admitted to my local hospital for tests, again I faced a great battle as I did not have optical nerve swelling a neurologist refused to give me a lumbar puncture, despite me been in excruciating pain and pressure, eventually after lots of tears and refusing to leave I was given a lumbar puncture with and opening pressure of 40, which gave me my diagnosis of intracranial hypertension and Cronic migraines
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology is what I've been treated for but I've not seen them as much I've needed to as there's isn't enough in my area
What has been the most useful thing for you so far?
Nothing, my care has been appalling so far, I've had no information on my condition. I've had to research it myself. When diagnosed I was given a piece of paper and told this what you have now take these tablets and you will be seen in 2 week and have it all explained then, I was seen a weeks later for 10 minutes when I was given different tablets, none of my questions answered and sent away again.
What have been your biggest difficulties?
Getting appointments with hospital consultants when needed
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends are very supportive and have got me through this life changing time
What things have you stopped doing?
Going out socialising, going to the gym, going out for long walks, booking holidays, most things as I don't know if my heads is going to be ok to go places. I'm depressed all the time which is a side effect of the tablets aswell
What do you think about the future?
I'd like to think I'd get better
What would you like to do if you didn’t have your condition?
Start reliving my fun, outgoing life again, even plan a final child with my partner
If you had to describe your life in a sentence, what would it be?
I'm living a nightmare, just need to wake up.
Finally, what advice would you give to a person in a similar situation?
Try stay positive
