NeuroTalk Support Groups - Does this sound like hemiplegic migraine?

Hi everyone,

nearly 3 years ago, after many years of twice-yearly bog-standard migraines, I started having episodes of total body paralysis lasting up to 4hours, accompanied by various neurological symptoms inc migrainous head pain (sometimes only mild and sometimes only after the paralysis)and including myoclonus (muscle jerks). Afterwards I'm drained, wobbly (sometimes recover quickly, sometimes takes all day) head pain remains and so do the neuro symptoms which gradually subside.

Initially the gp gave me triptans, then I saw the neurologist who stopped them and started propanalol. He later added nortriptyline and then topiramate as theses episodes have continued to increase in frequency - in the first 12 months I had 10 of them, however in January '14 alone I had 9 and I'm up to 8 so far in February with a couple of days to go.

They're usually in the morning, although I have had one in bed at night before going to sleep. I've woken at 2am only for the paralysis to start after a minute or so. I've been up to the bathroom and got back into bed and it's started. I've spoken to my daughter on the phone and it's started after that.

The neurologist diagnosed 'chronic migraine syndrome' (the head pain and neuro symptoms are almost daily) and said the paralysis was a "rare but known" symptom of it. I've been trawling the internet for anything similar - I dismissed HM because everything I'd read talked about one-sided numbness or one limb only, but I've read elsewhere recently that it can be true paralysis and it can be both sides. From what I read HM is the only migraine with any form of limb weakness, so if the neuro thinks it's migraine he must mean HM, yes?

I've been on 100mg topiramate for 4months now - although there seemed to be an initial improvement I'm worse now than before I started it, so I don't think it's working. I've been referred back to neurology - going to ask him to refer me to their headache and migraine specialist (if the appointment doesn't sensibly come for them anyway). I'd just want to see if people think that it would fit HM from what they know.

Thanks for reading my ramble. I'm just very fed up of this now