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Chronic headaches

Hi everyone,

A couple of years a go I went scuba diving and when I got out the water, I came over all dizzy and felt really unwell. I had tingling at the back of my neck and down one side of my arm. I spoke to relevant professionals who didn't feel this was related to the diving and this was a viral illness. Over the next couple of weeks, the tingling progressed into pressure at the back of my head. The tingling improved over time but I still get numbness and tingling over my face. I've had clear MRI and CT scans. Over the next two years, I would have a continuous daily headache that would be fine in the morning and then progressively get worse at the day went on. I took various headache medication which did not improve the symptoms. I was referred to the a neurologist who started me on Toprimate - on the max dose, this made me symptom free for two years. However, over the last couple of months, the headaches have started again sadly.

Has anyone got any suggestions what might be going on? I've been diagnosed with chronic migraine but I've never felt like migraine is what is what is happening (although migraines run in the family!) I think it might be damage to my back as I never suffered with headaches before I went scuba diving? Or maybe an autoimmune condition? I have problems with my thyroid.

I’m completely stuck and the return of the headaches has completely shook my mental health - any advice would be amazing!

  1. Thank you for reaching out and sharing your journey with us. It's very difficult to live with chronic pain of any sort - we're here for you!
    It's not uncommon for our medication regime to need a dose adjustment from time to time. Or even a medication change, in fact this happens fairly often with migraine.
    Have they explored your cervical spine yet? That may be another area to look at. Is also may be time to reach out to a doctor who is a true expert in treating migraine/headache disease who is board certified in headache medicine. These expert doctors can make a huge impact in our care. Let me share how these doctors are different and how to find one;
    Will you let me know what you think? Nancy Harris Bonk, Patient Leader/Moderator Team

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