I went to England hoping that finally I would get some answers as to why I was in pain, mainly. My mum use to do the accounts of a pediatric cardiologist up in London, he recommended a cardiologist for me to see initially. I only saw him once and he was semi alright but after stating that the headache was my biggest problem he decided to refer me off to a neurologist at another hospital in London. I’m not sure what my first impression of this new neurologist was, I didn’t dislike him but I also didn’t particularly like him either. He admitted me to hospital for tests but they were mainly to do with my heart and he started to ignore my biggest problem, I kept having to reiterate the pain to get him to listen. The only thing he did do was refer me to an anesthesiologist who gave me a greater occipital nerve block to see if that would help my pain, it didn’t, which was disappointing to say the least. So then it was back to the neurologist who had got far too caught up in my black outs and heart rate and blood pressure problems , though one of his team thought I may be hypermobile and thus also have POTS. So they decided to refer me to a professor of autonomic dysfunction that she use to work for. By this point it was half way through summer and it wouldn’t be long before I was jetting back off to Dubai to start school again.
The professor was amazing and was actually a really nice guy, he set up tests, 24 hour monitoring, exercise test and tilt table. And after that it was pretty clear to him that I did in fact have POTS. Which was all fine and well but why did I have a never ending headache. He started me on medication, and did another test to see if an injectable medication may help me because my black outs were so frequent and severe, the results came back in that it would help me. So I got put on that and two other medications, which resulted in me becoming stable on the POTS front. Nearing the end of the summer I was very concerned that my headache hadn’t been addressed, that no one was listening to me in that I needed help with the pain, I needed answers. My POTS professor eventually referred me to a headache specialist neurologist at a top hospital for neurology in London. After a full summer of having doctors that didn’t listen when I spoke about the pain being the main problem I had found two highly regarded doctors who were listening and wanted to help, my POTS professor and my new neurologist. My new neurologist was good, he was professional but nice and obviously knew what he was talking about with headaches. He diagnosed me with New Daily Persistent Headache, which is actually what I thought I had through my own research for quite some time. He had lots of ideas and treatment plans of how to approach it. Medications and procedures, and thus began my trips back to London to see him every 3 months. I had medication trials each lasting a minimum of three months, these were preventative medications aiming to reduce my level of pain, if one wasn’t working after three months I went back and got the next one. Over the course of the next two years I tried medication after medication, I tried every type of triptan abortive, I tried nerve blocks, Botox and infusions, but unfortunately none of it worked and each time I left feeling a little more defeated, helpless and hopeless.
Last November I saw my neurologist and he told me there was nothing more he could do for me because we had exhausted all options and none of them worked. Hearing those words made me feel more defeated and helpless than I have ever felt and it sent me spiraling into an even deeper pit of depression than I was already in.
To be continued…