It’s taken many years but we seem to be getting closer to a diagnosis that makes sense of all the weird and wonderful symptoms that have come to visit and decided to stay.
Its been so frustrating being sent from person to person, no one really having a clue what’s going on but choosing to dismiss it rather than say ‘I don’t know’.
I don’t fit neatly into a box and that hasn’t been very popular with some of the neurologists with less-than-excellent people skills.
In the last year I have been fortunate to meet a wonderful headache/migraine specialist nurse, a very knowledgeable and experienced man who is also personable and kind. I have a stable GP who ‘gets it’ after a long string of excellent but temporary GPs. And just in the last few weeks I have seen a new specialist neurologist who explained things really clearly and was able to offer lots of new treatment options – she was the most helpful consultant we have seen by a long stretch.
These 3 people have made a massive difference and we are now much closer to understanding what is going on.
On top of the chronic migraine diagnosis it seems that I am also experiencing hemiplegic migraine attacks approx. 3-7 times a week, each one can last up to 72 hours so I’m never free of one before the next one starts.
Not much is known about hemiplegic migraine or the long term effects of repeated attacks but here is some info for those who are interested: