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Scalp itch, scalp pain and headache

Hi I’m new to this forum. I have always suffered with headaches through the years thought it was sinus but since to my neurologist for nerve pain (trigeminal) she explained that they are probably a form of migraine. Not severe no aura but annoying. I do have a form of alapecia which can cause itching and some burning but it’s getting worse and severe pain in scalp and causes bad headaches which is getting worse. I take 300 mg at night for nerve pain but it’s not helping headaches and itchy and painful scalp. Does this sound familiar to anyone?? Maybe it’s not migraines at all?? Confused!

  1. Hi @Rainyhill.

    Thank you for reaching out to our community and sharing your experience with us. I understand how confusing and frustrating this must be. Let me see what information I can give you to help.

    Many people, over 80% who thing they have "sinus" issues may be experiencing migraine. Migraine symptoms can include face and tooth pain, congestion, runny nose, jaw pain and more. It's no wonder we think it's sinus! The title of this is Sinus Migraine, but be assured it's not an actual diagnosis; https://migraine.com/migraine-types/sinus-migraine/.

    There is something called allodynia that many with migraine experience. This is when normally painless stimuli, becomes painful. Like brushing our hair, or even a breeze blowing across our skin. This link has more information; https://migraine.com/living-migraine/pain-allodynia/.

    If this continues, you may want to have another conversation with the neurologist about how to manage this pain.

    My daughter has been experiencing alopecia and is being treated by a dermatologist with success. Do you see someone for this as well?

    I hope this helps, please let me know!
    Nancy Harris Bonk, Patient Advocate/Moderator

    1. Thank you so much for your feedback. It was very helpful. The info on allodynia sounds a lot like what I go through on my scalp. Burning pinching and can’t lay my head on pillow. Takes a while to get to sleep. Yes I have been treated by a dermatologist and I have been diagnosed with lichen planopilaris which is also a form of allopecia. I’m not concerned spots of hair loss it’s not that bad just towards back of head, I was getting injections for that. It’s the pain and migraines I get on scalp. This has been going on for over three years and pain itching and headache getting worse. Derm has tried so many different meds including steroids and antibiotics to no avail. I’m definitely thinking this is a nerve and Neuro problem. Have appointment soon. Will definitely speak with her. Thank you again for your help.

  2. Thank you for the update, @Rainyhill. Please keep me posted on how your appointment goes!

    Wishing you a low pain day,
    Nancy Harris Bonk, Patient Advocate/Moderator

    1. Hi, I know exactly what you're talking about. I had my last follow up visit with my ENT at the Mayo Clinic, and after rivision surgery, follow up treatment and knowing that everything is normal and fine with my sinus, he referred me to a migrain specialist at the Mayo. I had a consultation last week which made me feel confident that he will be likely to get to the root of my headaches. I'm scheduled for blood work, ECG and MRI's on my brain and neck to determine if I have underlying issues. This is the first time I felt like someone was willing to try and find a way to help me instead of just throwing pills at me and saying lets see if this will work.

      1. Hi @Sunporch51,

        Thank you so much for sharing this with us. I'm thrilled to hear you are seeing a doctor who is listening to you - YAY!!

        Please keep me posted and have a great day,
        Nancy Harris Bonk, Patient Advocate/Moderator

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