My story

Last August, I suddenly discovered that I was having trouble reading.

The words seemed to ‘jump’ around the page. A headache shortly followed.. and then didn’t go away until February this year. When I say it was constant, I mean constant.  The headache was mainly up the side of my neck, jaw, and over my right eye. Reading resulted in almost instant and overwhelming nausea and, a couple of times, fainting.  Throughout, I have also had ear pain, neck pain, shouder pain, back pain and – most baffling to any professional I’ve spoken to so far – a strange sensation in the roof of my mouth and teeth pain.

I have been through several GP’s, opticians, dentists, Neurology, ENT and Neurosurgery, all with not yet one single helpful piece of treatment (more about the treatment I’ve received later). All kinds of headache, including migraine and sinusitis have been ruled out.  Three weeks ago, I changed GP and was referred to a physiotherapist, who I have now seen twice.

During this referral time, I was able to see a massage therapist.  After five sessions of trigger point massage therapy, I was finally able to identify that the origin of the problem (and this is not yet conclusive) is probably tension in my neck. I am currently waiting for an MRI of my cervical spine.

So, that’s where I’m up to.

One of the few things that has kept me sane throughout this time has been knowing that someone out there knows what I’m talking about – something that I have rarely experienced in real life!  So what’s your story?

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3 thoughts on “My story

  1. jezzybel says:

    Hi! Just found your blog. I realise how most people with chronic pain feel about unsolicited advice, and I’m also sure someone would have already ruled this out for you. However, the source-at-neck and problems reading and pain around one eye sounds a bit like occipital neuralgia, and I wanted to suggest it on the off chance nobody else had. It took me about six months to get diagnosed and my normal GP hadn’t heard of it. Whether that’s helpful or not, best of luck!

    • Toni says:

      Hi there, I’m sorry I don’t know why I didn’t see this comment until now. I am more than grateful for any advice on here, this blog is really my way of reaching out to others going through the same thing, and I’m grateful for any suggestions. I have come across occipital neuralgia and it is on ‘the list’ of possibilities in my own research (it hasn’t been suggested by any doctor I’ve seen yet). I’m having an MRI scan on my neck next week, I think if that doesn’t show up a specific problem with the cervical spine, I’ll be back to looking at this.. Have you been treated for occipital neuralgia, and what does that involve? Has it been successful? Thanks for your comment!

      • jezzybel says:

        No problem! I’ve had flares for about three years now, and for me, it’s my trickiest problem to treat. It doesn’t respond to any pain medication I’ve tried (my back issues do). My most effective treatment combo is Lyrica (pregabalin, although gabapentin would also probably work), extreme heat on my neck, and massage, focusing on trigger points where my skull meets my neck (I can tell where the pain is originating from, and that’s usually what needs pressed really hard). I do a lot of neck and shoulder loosening yoga on a daily basis which seems to be helping as a preventative / delaying additional flares.
        Hope that helps! Best of luck.

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