My never ending migraine

My story is long, but I will try to keep this brief.
I have had headaches for as long as I can remember and experienced my first visual aura at 12 years old.
The 'classic' migraines remained infrequent and the headaches although troublesome, would come in `waves` and so although uncomfortable, it was bearable and I managed to live a relatively normal life.

In my twenties things have worsened considerably where I developed something I never thought possible.. a 'persistent migraine aura' (PMA).
I see lights in my eyes every single day. They appear in my vision intermittently in the forms of blobs, squares, crescents, lines and shimmers, varying in colours from white and black to vibrant glowing yellow, blue and silver. This is in addition to the more `normal` pattern of a classic migraine where the lights will quickly progress into a growing flashing arc and then slowly settle down in 30-40 minutes leaving us totally washed out for a day or so. These, unpleasant as they are, at least I know are recognised, 'normal' in the migraine world. People can relate to them, where as this constant visual aura is a world of it's own, where I have yet to meet anyone experiencing anything similar. Even the specialists are perplexed as to what is happening or how to treat it.
I have of course tried all the usual preventatives to no avail and sought every alternative therapy possible in a desperate bid to help this, nothing does.

The lights can and do happen without a headache, although my head is going through a bad cycle at the moment so both are happening together. Every day I wake up and feel like I've been hit by a bus. Drained and washed out, pained and highly distressed by these visual obscurities.
This has taken the best part of the last 10 years of my life and continues to destroy everything I try to do, every attempt to re-build the life it has taken, It's always there, holding me back.

I have tried the whole 'pull my socks up' thing, after all to everyone else I seem fine, yet as much as I try and would love to ignore these defects, a thumping head and dazzling lights in the field of vision are pretty hard to ignore, never mind how unwell it all makes me feel.
So I live in this unique world, isolated from everyone around me, misunderstood and judged so wrongly. If only people knew. If only they could see for a second what I see throughout every day. Or felt the pain and exhaustion of living with this.
If anyone reading is suffering anything similar, please do reply!
It's an absolutely awful condition to live with, made harder by the rarity and confusion of it. I would be so pleased to meet any of you with PMA to share our experiences, ideas and to hear of how others cope with this, because I am certainly struggling too.

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