I started having painless, migraine aura at the age of 14. I have always got lots of aphasia - at its peak I can say only one word a sentence. It gives lots of brain fog, confusion, and as a warning sign I get feelings of dread. I used to only have 1 or 2 a year, and it only lasted a few hours. It was generally better after falling asleep. I never took medication until 2014.
A few years ago I started to get more symptoms - shaking in my arms, pins and needles, yawning lots, numb and cold lips, freezing cold shakes, people next to me looked flat or stretched tall, overwhelming feelings of fear. I figured wine and blue cheese were triggers, stayed away from these, that seemed to help. Again, it only lasted a few hours in total.
In 2014 I had one that wouldn't go. After 3 days it got much worse, my legs were shaking as well as my arms, and I couldn't walk. I was at work, my manager took me to hospital. I was checked for stroke but this was fine. They said if it happened again, go straight back to the same hospital - it did happen again the next day, back I went. I saw an emergency neurologist who said my history meant this was probably nothing worse than migraine. I had an MRI a week or so later and it was clear. After having the migraine for 2 or 3 weeks I started taking Lamotrigine, and it started to lessen. It took another week or so for it to go completely.
A few months before this I had started to become lactose intolerant, but not having lactose didn't seem to help. The doctor suggested not having any dairy at all, not even additives, and this helped my stomach within 24 hours. I noticed a few weeks later that even having a tiny ingredient in a list would set off migraine symptoms again. So since then, I have no dairy at all. I have been ok with beer but no other alcohol, particularly anything aged.
I stayed on Lamotrigine for 6 months, starting with 25mg then 50 mg. I tried 100 mg but had weird side effects - OCD behaviours and thoughts. Coming down again to 50 mg stopped this.
I came off it in May 2015, as directed by my doctor, with no problems.
It's now February 2016, and I had it happen again for about 10 days. I think it was caused by lack of sleep and stress at work. No shaking this time - I stayed at home and rested, and I didn't get bad enough for hospital. The feelings of fear can be very scary though, and for a few days concentration on anything was very difficult. I couldn't have written this.
I went back on Lamotrigine 6 days ago, and my mental state improved within 48 hours - less emotional, more stable, no fear etc. Still got brain fog though, absolutely exhausted and just had to tell my boss I will need another week of work. Scared I may have no job next year as a result. I went back to the doctor today as my boss wanted proof I am well enough to work, I was feeling sorry for myself, but while there I realised how silly this is, as other people have worse migraine or are dying.
Anyway, I have given all these details in case it helps anyone else with their recovery. Lamotrigine works for me, the side effects are minimal - I drop things easily and I think my skin is drier. Its a horribly lonely, isolating, terrifying condition, and a lot of doctors don't understand it. I've seen 3 great neurologists, and 1 terrible one. Anyone who tells you 'I've never seen anyone like this' doesn't use the internet, because there are lots of us out there.
I do wonder if this is a form of epilepsy - partial seizures - rather than migraine. My symptoms are definitely more similar to epilepsy now, the only difference seems to be aura from migraine can go on so much longer.
Good luck to anyone reading this.