Well the last couple of months have been full of ups and downs.
The ups being good days and playing music, meeting friends and the bad being hospital visits, consultant meetings, results and I still cant see out my left eye !

A few weeks ago now I met with my consultant, and another consultant from a high up place in the care of epilepsy in the whole of kent who was lovely but this meeting totally confused me as It was a surprise not to be just my normal consultant. I always have questions to ask my consultant but it all went out the window when I went in and the other man was there, therefore I didnt get chance to say hardly any of what I wanted to ask. In fact I left with more questions.

The man was there to talk about my situation and the posibility of doing something more invasive like surgery. This has been spoken about in the past and I was told a few months previous it looks like it may be possible…. it turns now that this isnt a option yet as my seizures dont just originate from my temporal lobe like they have done all my life but now have also spread to the occipital (explaining the loss of vision from my left eye). This for me was a complete kick in the stomach yet good news as well as at least I knew why my eye had been on and off and now pretty much off for the duration of time. 

I liked the extra consultant yet It was a really difficult meeting being told that the end of the line as to what they can do is very near. If surgery isnt a option and the drugs are not working then at the moment we are at a standstill. However there are a couple of other options being looked into as I type so for now all is not lost… its close but we’re not there yet. 

The other issue we spoke about in the meeting was my cluster headaches. It makes things more difficult that I have these as well as medication reacts and all sorts of things which I dont really understand myself yet they just said its a little more complicated and they tread carefully. Anyway there was this drug I was told I could try a few months ago. I had to have a ECG though to check my heart as it reacts with the heart. I had the ECG done and I wanted to now start the drug so I brought the subject up. This too was not a option as the ECG came back with a problem…. yet they didnt say what, and that was one of the questions I forgot to ask as they went into a different subject before I could really finnish what I was about to say. 

I left the appointment a bit grumpy and down. It was hard being told the end of the road is neigh, but i had a few answers and I knew not to panic about my eye too much and I knew they were now working hard to find me some answers and help. 

Still, got to keep going, have faith and “just keep swimming, Just keep swimming” ! 

Now to wait for the reply and answers.