“Hi, my name is Marith (@clusterkoppie)! I’m 24 years old and I live in the Netherlands. 4.5 years ago I was diagnosed with Chronic Cluster Headache. It is a neurological disorder characterized by recurrent, extremely severe headaches on one side of the head. It feels like someone is stabbing a burning knife into my left eye. I have 6-8 attacks daily, everyday and it completely changed my life. I studied medical sciences, but I could not finish my study. I had a great social life, but could not keep up with everyone (or they with me). I was devastated!
I started sharing my story on Instagram to gain more awareness for this disease and to show people that it isn’t ‘just a headache.’ I’ve slammed my head against the wall to try and numb the pain, but it doesn’t work. I’ve tried a lot of medication, multiple surgeries and other medical treatments such as nerve blocks. Unfortunately nothing really works for me. The only thing that ‘works’ is to wait until the attack is over. My attacks typically last between 1 and 1.5 hours and happen mostly during the night. That means I barely get any sleep and I’m exhausted during the day. Between the attacks I try to enjoy the little things. There is a lot that the disease has taken away from me.
I’m hoping that they’ll find a cure one day. Until that day, I will fight the attacks and tell people my story! And hopefully I will never hear someone say again that Cluster Headache is just a headache or that I just need to take an aspirin!
I want to thank Rare Patient Voice for letting me share my story and giving a voice to patients and caregivers!”