Onthemove1971

You could post to the Podcast migraine specialist in their "Heads up"/comment section. They are very helpful and I hope they respond.

Are you taking other preventatives?

Magnesium glycinate 3x a day has really helped me. I started.at 100mg And just new increasing it to 450mg 2x and 100mg 1x. It has helped make them less painful and now I have less.

Good luck!

chrissy33 in reply to Onthemove1971

I have not but if the migraines are coming back l will try anything

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Cat00

Alodynia is quite a common side affect of a lot of chronic pain conditions . Both my mother and I get scalp Alodynia. What seems strange however if that if you haven't had a migraine in a year your not exactly chronic. Shame your doctor seems so clueless when as far a I am aware knowledge of Alodynia has been around for a long time. Is it possible for you to find a different doctor?

chrissy33 in reply to Cat00

The topirimate seems to of stopped my migraines which is great but. I am now losing my hair that's why l am coming off and just by reducing by 25mg within 5 days my migraines are back.

I was put on topirimate due to having stroke like symptoms and consultant said possible it was hemiplgic migraine.

But the skin symptoms l have had for years and would get them a few times a month lasting a few days each time.

But gp in UK just said migraine and nothing ever touches the pain in my skin.

I have not tried magnesium so l will try that.

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Cat00 in reply to chrissy33

As far as I know Alodynia is just symptomatic of your pain systems going haywire although some people get massive bruising and swelling with their Alodynia also. I know some people get botox for their scalp Alodynia but I, until covid, had regular botox for chronic migraines and it never helped my Alodynia!

Topiramate had no effect on me but of course hemiplagic migraines are a different ball game. Very scary things to go through. Gp's do tend to dismiss things they can't help, which makes us of feel like we're just going mad.

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blinc

So sorry to hear what you've been going through. I'd never heard of allodynia until I had this horrible sensation less than a year ago, out of the blue, terrible sensitivity, just as you explain, like sunburn, all over just one side of my face & into my scalp - I've only had it a few times, it's just bizarre, it's just some comfort to know that we are not going mad, just a shame doctors don't recognise this condition. Wishing you well.

chrissy33 in reply to blinc

That's just how l describe mine. I know when it's coming too as l also get a blister on the top of my palette that turns into a big ulcer then the sensation starts.

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jwilliamsb

I'd be grateful if you could post a link to that article, I'd like to read it myself.

I get something very similar to what you're describing, though symptoms may vary a bit. As I understand it, allodynia simply refers to irritated nerves, and the painful response is felt when the area is touched (lightly or otherwise), but when I get these pains in my face and scalp, they hurt all the time, not just when touched. There are times when I can't wear my specs because it's as if the bit that goes over/behind the ear is pressing really, really hard and its agonizing. Also times when I can't lay down because my scalp is too painful.

I also get symptoms in the mouth - it usually starts with a pain in and up my face, then within a couple of days, a 'breakout' occurs inside my mouth - that may look like red lines or white dots or red patches, occasionally a vaguely blister like thing. Sometimes the pain reaches up to my temple and brow (always the same side) and I get red patches in and around the eyebrow which initially itch. My scalp will also often be painful whichever side is affected (usually the left side, but not always). It's never occurred to me it might be a form of migraine, it doesn't present in any way like a migraine, it just feels like terrible nerve pain, maybe like a nasty bout of neuralgia or something. I do get migraine, usually aura migraine, and have had one hemiplegic attack on the left side, so its all probably part of the pain syndrome, but a migraine of either sort does not occur with the scalp/mouth/ear/face/jaw pain.

I was seen by my hospital microbiology department about 10 years back and was given swabs to use when I got symptoms in my mouth - unfortunately, all the swabs showed nothing, but they concluded whatever was going on was definitely a nerve problem and might be related to Herpes of some sort but that was only a theory.

Anyway, seems to me what you're suffering is actually nerve pain, and epilepsy meds aren't great for that; sadly, nerve pain is notoriously difficult to treat. I use a couple of alternative methods to handle my outbreaks because painkillers just don't touch it. You might also investigate occipital neuralgia if you have pain at the base of skull along with the other pains; I worked out the base of my skull was always painful somewhere or other when I got all the other facial pains, but knew nothing about occipital neuralgia until someone on here mentioned it a week or so back.

Miriam

chrissy33 in reply to jwilliamsb

nhs.uk/news/neurology/sensi...

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chrissy33 in reply to jwilliamsb

americanmigrainefoundation....

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jwilliamsb

Thanks for the links - the second one I'd found myself, but regardless, this is not only what I experience, because the pain is often there without any stimuli; other times, I only notice it when the area is touched,like wearing glasses or brushing my hair. I'm sticking with occipital neuralgia, which seems to fit my own symptoms better.