Hello Lucy

I'm new here too - but not new to the sorts of problems you describe. In fact, I could probably do a PhD on it all now.

And I say that because unless you do your own research the doctors are never going to tell you anything useful.

Your post rang a few alarm bells for me, and here's why: you're in the UK like me.

The NHS is more or less stumped, I have discovered, when it comes to any unusual neurological problems. May I presume to
offer you some advice?

Please, never ever let an NHS neurologist get away with making you feel like you're losing your marbles, never ever let them make you feel like it's just 'all in your mind'. There are quite a few who will try hard to do this a) because you are a hormonal woman (yes, even the female docs do this) and b) because the NHS has no money at all to investigate and treat complicated, chronic neuro symptoms. Essentially, if you're not dead or in a coma then you can get on with it.

Write all your symptoms down and write down the answers. Better still, take a little voice recorder with you (or use a mobile phone recorder). You may not want to tell the doc that you are taping the consultation. But if you do, I can bet that she will be very proper - if you don't tell her I can bet you'll be surprised at the way she spoke to you when you play it back later....

Migraine disease can be very serious - more serious than UK doctors understand. MD increases the chances of stroke, TIA and a range of other neurological problems if not treated properly.

'Rare complicated migraine' is NOT a proper diagnosis. See the International Headache Society's diagnostic criteria - freely available online. These are the criteria which the NHS is supposed to follow. It was and is completely unacceptable to be given that vague diagnosis.

Sumatriptan, like all the triptans, is CONTRA-indicated in the rarer forms of migraine. It can make the migraine much worse - or create an even worse condition. If you took all those meds within a short time, the neuro may tell you that your headache was just a reaction of some sort!

May I suggest that the best thing to do with such severe pain is to go to A&E?

All the sx you describe can be associated with migraine disease. And they can also be a by product of epileptic-like disorders. There is a very rare form of MD that's known as Alice in Wonderland syndrome - the sufferer's perceptions of the external world as well as bodily sensations can be very distorted. This variant got its name from Lewis Carroll's book - he was said to suffer from this rare MD form, hence the way he wrote his books about Alice's adventures.

Seeing 'air particles' is something that some others call 'visual snow'.

Your perception of sinister 'presences' though is often more associated with right temporal lobe epilepsy/epileptiform activity.
PLEASE do not think that it's ridiculous. Disproportionate size of body parts is also well known in epilepsy. These and all the other sx you enumerate are well-known and researched. Please do not let the neuro fob you off or make you feel stupid about them. Your visual 'drift' could be of interest to the neuro, please make sure to mention it.

Yes, do tell the neuro all your sx. I know the issue with the DVLA is a worry. To be honest, I doubt whether you'll get anything of a clear dx anyway! But it's always a good idea to be frank with your doc (if only so that they can't wriggle out of a misdiagnosis claim further down the line!). Most importantly though, you can never tell when these sorts of neurological distrubances can go mega - and your future health may depend on having a full clinical history available to the emergency docs. (<sigh> I speak from experience....)

I do wish you the best of luck with your new neuro. Don't hesitate to ask for a second opinion or go private if you're not too happy with her. Keep us posted!