Migraine with aura, visual effects, numbness and confusion.
I know everyone has different experiences, but it really helps to talk to (and empathise) with others in the same boat.
I also want people to know that they are not alone.
I've had them since I was 13 (now in my mid 40s and perimenopausal).
My triggers include hormones (they were worse in all four of my pregnancies, my missed miscarriage and any changes in my hormones). At the moment I am still having regular periods, but I am dreading how the menopause will affect my migraines.
My other main trigger is flashing or bright lights - anything from flash photography, to those rotating lights on breakdown vehicles or a flickering light in a room. Even bright sunlight reflecting on metal.
Each of my migraines are different, which is why I find them so scary despite having suffered for most of my life with them. They are so unpredictable. Some more severe than others.
I can go through phases of getting them more frequently - sometimes 2 a week, or longer spells without one - I never go longer than 3 months without one though.
About once a year I get a really bad, prolonged one which absolutely terrifies me.
They always come without warning, although occasionally I get this weird taste in my mouth before having one.
The first stage is almost always the visual stage. I will suddenly look at someone and realise that half their face is blanked out so they look like they only have one eye. If I look at a page of writing, half the letters will be missing, and when I look at my hand I can only see 3 fingers.
It's like a blind patch in my vision with a sparkling shimmering border that gradually increases in size to effect up to 80% of my field of vision.
The visual stage is probably the most distressing part for me. It always lasts half an hour (any longer than that and I start to panic) but with the more severe migraines I can have multiple visual stages, each lasting half an hour with just a few minutes in between.
The next stage is the numbness phase, which fortunately I don't get with every migraine. This always starts with my little finger on one hand (it varies which side it effects with each migraine - sometimes left, other times right) going numb and tingly (a different feeling to when you lie on your hand and wake with pins and needles - it's more intense than that), then the numbness gradually spreading over each finger in turn, then my hand and up my arm. One side of my face will go numb and then my tongue (which is really distressing as I feel like I can't swallow). Occasionally one foot will be effected.
This lasts about 20 minutes, but again can return later in the migraine.
Then the confusion stage, which is really scary.
I can't remember peoples names. I can't visualise faces of friends.
I forget how to spell. I can't process a page of text. None of the words make sense.
I get my words muddled up, call things by the wrong name.
I know exactly what I want to say, but I just can't form a sentence. None of what I say makes any sense.
I usually start to panic at this stage and get very tearful.
I get noise sensitivity, everything around me seems echoy and too loud. It also effects my taste and smell (not that I feel like eating).
Then there is the sickness and the dizziness which can last up to an hour. I feel completely disorientated and disconnected.
The final stage is the actual headache itself which is really intense and feels like someone is banging my head with a sledge hammer. I also get an achy neck which is really unpleasant.
The day after I always feel completely exhausted and drained. My legs are always weak and I have a throbbing pain in one side of my temple.
I still, after all these years haven't found anything that works for me.
Extra strong paracetamol takes the edge of the headache, but doesn't help with the neurological symptoms.
I feel for anyone else who suffers.
If you have found anything at all that works for you, please tell me