Hi my name is Carrie and I am a young adult living in the UK and was diagnosed with HH in 2013. I am writing this blog to show how easy it is for patients with HH to be misdiagnosed and undergo unnecessary procedures. Thankfully I have turned my life around but it wasn’t easy after such major surgery.
It’s been two years since I underwent a temporal lobectomy. After being diagnosed with temporal lobe epilepsy I felt this was my only chance to be cured of daily seizures. How wrong was I? After the surgery my seizures increased from 10 gelastics seizures daily to every 15 minutes. I couldn’t quite understand if this was normal but my gut instinct was telling me it wasn’t. My neurologist was confused and really didn’t understand why my seizures increased as opposed to decreasing. I was sent for an MRI only to be given the news I was not expecting! My diagnosis was incorrect. I didn’t have the temporal lobe epilepsy with which I have been diagnosed for 31 years. In fact I have HH.
How do you possibly get your head around going through major brain surgery to find out it was unnecessary?
Well I never thought I would get over this especially as my health took a turn for the worse. I am glad to say it’s now been two years, and I am stronger now than I have ever been before. But what got me through was the determination to stop this from happening to others. I have somehow managed to turn a bad situation into a good one by ensuring I do what I can to raise the awareness needed for this condition. If it helps only one person in the future then all the time spent talking to specialists will be worth it.
My story is just one example of many who get misdiagnosed or have unnecessary procedures.
Two years down the line my seizures are back to 10 per day but the thing that gets me through each day is the drive to stop this from happening to someone else. They say things happen for a reason so this must be my reason!