This week has been hectic and a bit more dramatic than expected. We started off in London at the INFACTUK meet up which I think would have been a better idea to attend on my own but it was really helpful and also quite weird because of how I'm there representing myself and my family and then there are others fighting for support and grieving for lost children.
Unfortunately the next few days got worse and I came down with a hemiplegic migraine on Wednesday evening which I was able to get under control before it got worse. My migraines have been going on since I was around 11 and have got progressively worse over time. Fortunately I figured out a few years ago that salt and fluids help to relieve them. No medicine has ever worked they just make me sick. A few years ago I realised due to the link between adrenal insufficiency and salt intake was something I needed to keep balanced or the migraines would come more in hot weather when I was dehydrated.
Thursday was spent in a&e as I wasn't able to raise my eyes and my blood pressure was going through the roof. Photophobia was having a rave and I wasn't having a great time. Of course it was treated as migraine no matter how much I tried to tell them it wasn't and I ended up having an injection in my leg that I didn't want or need. I'm almost positive that I have some kind of inter cranial hypertension as my head feels like it's going to explode. It's not at all like a migraine. It's becoming very clear to me that I'm going to have to take charge of my own health a bit more because nobody else seems to understand how it's happening.
of course I was discharged and left to it as usual I really need to research a bit more to understand how this is happening and find a dr willing to listen to me.