hi there....never done this before so hope i'm doing it right!!

i'm due to go for a second neurology appt - the first time was nearly five years ago (was in my mid twenties) when they sent me the following day despite long waiting lists and had mri for vision loss but no headaches. i was eventually diagnosed as having "rare complicated migraine" and told strange things may happen but no clarification. well...many strange things have been happening which i intend to discuss with this new neurologist (even though it terrifies me that she'll think i'm losing my marbles). the trigger for this new appoinment was an attack which not only was prolonged (10hrs) whereas normally the visual problems last 30mins but also for the first time an incredibly severe headache which i nearly overdosed on strong pain meds (60mg codeine,tramadol,mefanamic acid 500mg and ibuprofen all within 4 hours to zero effect and then sumatriptan). the headache was most severe for the 10 hours both sides like brain freeze after eating ice cream too quickly not throbbing and on both sides and at the front not back
also over the last few years i have had the following:
buzzing in the ears
funny smells
pizza that tasted like paint
numbness in right forearm
forgetting the place where my husband proposed!! i have (had?) an excellent memory and we were driving through the village where we got engaged and my husband started to reminice i knew i SHOULD remember it but couldn't recall anything as to why the place was special
coloured blobs
seeing the air particles?
nightmares where i can FEEL a presence (demonistic) where usually something/someone wraps around my right arm and then jumps onto my face trying to bite me....sounds ridiculous but truly terrifying i can feel it happen!
days where i just cant seem to get motivated, really muzzy headed
lying in bed at night not sure if i'm asleep or not- imagining body parts (nothing rude....usually my forearm or lips) being zoomed in and disproportionately large....sounds really strange but that's the best way i can describe it
being in a conversation and suddenly realising that i cant seem to listen to the person..i can hear them but it's like there words are "going in one ear out the other" without any of the content being retained at all...then i start to panic because they will think i couldn't be bothered to listen and start trying harder to concentrate on the conversation but cant!!
sometimes words that i have been using all my life suddenly look completely wrong or unreal?? i keep checking the spelling and am certain the word exists but it looks "silly" ???
also if i'm tired, objects in my peripheral vision seem to move but jump back when i look at them then start to drift again from left to right

somebody mentioned partial seizures...that worries me because we live in a rural area and i cant afford to lose my driving licence as i have 2 young children. does anyone out there think this sounds familiar? i would be tempted not to mention the wierd symptoms in the appt to avoid any potential loss of my licence....dont want medication anyway as most things i can live with!

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!

Hi Lucy,
I kind of felt like I was reading my story, I don’t have everything you do but have had some in the past.
At first I thought it was partial seizure, but it turns out to be migraine. Who would have thought someone could have migraine without the pain?

My name is Jen, I’ve recently been DX, with migraine variant, I don’t have the head pain, and instead it's vertigo.
I have rocking type balance issues 24/7
I'm sending you this site; it explains a lot about migraine aura and the strange things associated with aura, body distortion, ect
Hope it helps.
It's natural to feel a little crazy when all this stuff happens.
I DID!

http://www.migraine-aura.org/content/index_en.html