Allodynia – it’s a real thing!

I have been suffering with migraines for many years now. About 5 years ago I started getting this area around my right temple which included the right ear and across the right side of my face which caused a lot of pain. At first I had trouble wearing my glasses – the arm caused this pain to flare up. Then it would also happen when I put anything into the right ear. It progressed to even touching these areas that would cause pain. Now the top of my scalp has this same problem and I have to keep my hair extremely short because my hair hurts me!

I have seen several different doctors about this – 2 neurologists, an ENT, 2 GP’s and none have ever said anything about Allodynia. Recently I went for a overnight sleep study test to see if I had sleep apnea (just another thing to rule out for the cause of the migraines). The registered nurse that I saw afterwards blew me away when I began to (once again) describe my face and scalp pain symptoms. She actually knew what I was talking about and had a name for it – Allodynia. I couldn’t believe it. The neurologists at first called it Atypical Trigeminal Neuralgia and the ENT called it Myofacial Pain Syndrome – both of these terms did not sound correct to me. Allodynia sounds exactly what I am experiencing. I am so glad to finally know that this is something someone else has experienced other that me and that it has a name.

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Comments

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  • quilter laura
    3 years ago

    Yes, you’re right Absolutely glad to know allodynia is real and not “all in my head” although I wouldn’t wish it on anybody.

    Does your short haircut really help? I’ve been considering a short haircut, but when my hair hurts I pull it up tight in a ponytail or bun. For some unknown reason the ponytail pain relieves my allodynia and I’m afraid of losing that bit of relief. But I would shave it all off in a heartbeat if I believes that would help.

  • Jenn Lebowitz
    3 years ago

    Hi ZennedOutMigraine-

    Thanks so much for sharing your story! You’re right- allodynia is certainly a real thing, and you are not alone in experiencing it! I thought this article might be of interest: http://migraine.com/blog/migraine-allodynia-and-central-sensitization/.

    We’re so glad you shared, and that you’re part of our community! Thanks again. Wishing you our best!

    Regards,

    Jenn (Community Manager, Migraine.com)

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