Co-morbid hemiplegic migraine

Hi, does hemiplegic migraine run alongside AVM for you? What order were you diagnosed and what’s your experience?

Thank you.

Hello, @eternalsunshine (fabulous name!) Welcome to avmsurvivors! It’s good to have you join us.

I’ve had headaches for years but never labelled them as migraines and I am not sure if they are related to my AVM at all.

The one bit of information I was going to share with you was that I had a copy of Migraine by Dr Oliver Sacks, which I lent out after reading about half of it and I’m not sure I ever got it back, but in there Dr Sacks describes true migraine as something that invariably transgresses the body – from one hemisphere to the other – and that any apparent migraine that doesn’t proceed like that should be considered with suspicion as not a true migraine but having some other, underlying, cause. Thus, I’m pretty sure I’d attribute a hemiplegic migraine to something being driven by your AVM (but note, I’m not a doctor: I’ve read a book, that’s all!)

I’d also say there are plenty of folk here who have migraines or migraine-like symptoms, so again, I’d see a link.

If that helps.

I hope some others will chip in and share their experience.

Best wishes,


Thank you Richard. I’ll have a look at Oliver Sacks. I’ve read so little regarding migraine over the years because reading about them or focussing on them in any way can often literally cause pain.

It’s disconcerting that I’ve begun to experience stroke-like symptoms; loss of speech, left side weakness/temporary paralysis, confusion etc., as my migraine has ramped up to hemiplegic migraine and only now, (April 2020) has my AVM been discovered and diagnosed. No evidence of a bleed or the TIAs being caused by the AVM.

It’s confusing and difficult to accept, according to the Neurosurgeon, that the two are unconnected.
I’m still processing it all, obviously.

I should add headaches with visual disturbance, vomiting, difficulty forming sentences without intense pain should probably be considered migraine. It’s very hard, in my experience, to get help in the UK from any NHS sources for migraine. That’s certainly been my experience over the last 38 years.

It is a shock.

I don’t know whether these things are connected or not. On the one hand, when you’ve got stuff amiss with your brain or its blood flow or intracranial pressure, it’s very tempting to see a connection (and I’d invite everyone here to put up their hands if they have migraines or migraine-like symptoms and I think we’d see a connection, though migraine is incredibly common). On the other hand, having an AVM doesn’t inoculate us from all of life’s other ills, so we have to remember that we can have other, unconnected things just like anyone else.

To understand the diversity of migraine, I would say that Sacks’ book is useful. It is so broad, I would never have imagined. As proper migraine (not something migraine-like, induced by some unusual occurrence in the brain) it is also considered quite benign. I should think that would be a good reason for the NHS to struggle to offer you much.

… At least this is my understanding based on Sacks’ book. Medical understanding may be better than when he wrote it in 1970.