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Stroke Diary

A Slightly Extraordinary Day

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I've talked here before, more than once, about how my migraines cluster and how for the last few winters I've had a mega cluster starting around 1st November and lasting until Christmas time. Well a week ago today I finally got around to going to talk about this to my GP, not least because I had some new symptoms.

Having poked me about he said he thought the best thing to do would be to refer me to his favourite neurologist, one Dr Graham Lennox, and as it meant an 11.5 week wait to see him on the NHS I booked an appointment to see him privately which I did today.

Dr Lennox turned out to be a very nice man and a fellow migraineur too. He's relatively lucky: as he's got older his migraines have changed in character, now he typically gets aura1 but no headache (which is pretty textbook apparently) whereas I've gone from only having aura to it being rare to have aura but having full on headaches.

I talked him through all my symptoms. He says it sounds to some extent like the effect of overuse of the very drugs which get rid of the headache and also a bit like cluster headaches, which is another class of headache. But neither is an exact fit, as he said "I've clearly not been reading the textbook".

Anyway his suggestion is that I try prophylaxis using topiramate (also sold under the brand name Topamax). It's primarily an anti-seizure medication but a secondary use if for migraine prophylaxis. I've talked before about my lack of enthusiasm for prophylaxis but after the winter I've just had I'm willing to give it a go, especially as a common side effect of topiramate is weight loss, which wouldn't do me any harm at all, as opposed to the weight gain common with many other drugs used for migraine prophylaxis. There are other potentially problematic side effects: tingling in the fingers and around the lips is very common but most people seem to cope with it, and rarer effects include mood changes, kidney stones and a particularly horrid form of glaucoma, but that's very rare.

So that's that. And if I get on with topiramate we could look at increasing my dose to levels suitable for keeping my epilepsy at bay and coming off sodium valproate (although I think that would mean giving up my driving licence for a while).

But as it turned out this was just the first act in a two part drama as the most surprising thing was what he said about my epilepsy.

I'd only told him about my epilepsy for information, it's pretty well controlled and I'd not anticipated him doing anything but he said that a bleed in my pons, which is what I had back in 2002, should not have left me with epilepsy as the pons is not an area of the brain where migraines can start. He also didn't think the bleeding I had on the surface on my brain at the time (from the impact I had when I fell over) would be responsible.

More likely was some issue in my temporal lobes, possibly another tiny cavernoma and in the nine years since my last MRI scan they've got a lot better at detecting small cavernomas: they can now see then down to the size of a pin head.

The significance of this is that although they're still extremely leery about operating on the pons (although he tells me that it is now being done in the UK, which it wasn't back in 2002) it's possible to furtle about in the temporal lobes with relative impunity so if they did find something there was a possibility that they could dive in and cut it out(!) which would hopefully leave me seizure free without medication!!

Bit scary mind you, but it would be rather fine.

Anyway he's writing to my GP recommending I go onto topiramate and that I'm booked in for an MRI scan on the NHS (he did ask if I was paying or I had insurance, Beth tells me an MRI done privately would set me back about £800). He'll then take a look at the MRI and recommend where to go from there.

  1. The classic migraine "light show" - a pattern of bright light, normally in a crescent, and apparently in one eye.

Written 07/03/11

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