Stabbing headache.. GCA? Update : Still got pain... - PMRGCAuk

PMRGCAuk

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Stabbing headache.. GCA? Update

Clarbeston profile image
5 Replies

Still got pain - now more of a constant burning sensation on the top of my skull. I phoned the surgery and had a call back from the "advanced practitioner" within 15 minutes. She asked all the right questions and arranged an appointment with my GP for 2 hours later. GP is of the opinion that I have a trapped nerve. She didn't say occipital neuralgia but I guess that's what she was referring to. She prescribed amitriptyline for the pain. I don't have pain in the back of my head or neck. Lots of blood taken for tests, all came back normal today ESR 17 CRP <5 . I think ESR was 50 when I was diagnosed with PMR in 2020.Thank you to all who offered advice and their own experiences. Fingers crossed it goes away.

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Clarbeston
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PMRpro profile image
PMRproAmbassador

Occipital isn't the top, it is the back of your skull

en.wikipedia.org/wiki/Occip...

Sounds horrible - hope they can identify it

LIVEORDIEHEREIAM profile image
LIVEORDIEHEREIAM

Sure sounds a lot like my experience when GCA got diagnosed! If you are on prednisone for another reason, it slows the GCA down but eventually, this happens. If you can convince a Dr to give you even a few days of 60 mg prednisone, it could help you avoid the worst- permanent blindness if you do have GCA! Wishing you the best!

Clarbeston profile image
Clarbeston in reply toLIVEORDIEHEREIAM

Did you have any other symptoms..jaw pain, visual disturbance etc?

LIVEORDIEHEREIAM profile image
LIVEORDIEHEREIAM

Yes. Every time I ate something, my salivary glands were painfully over-active, squirting like crazy and they were hard, as if over-full. My Dr thought I was imagining it. Chewing was painful in "the muscle is over-worked" kind of way that was gone quickly after the chewing stopped.

I also had visual disturbances in the form that I now know is mostly associated with visual migraine. (Something that I had no point of reference for because I never had any kind of migraine and very seldom even had headaches.) It is called scintillating scotoma. Google it if you haven't seen it before. This is not what most GCA sufferers report by way of visual disturbance. I guess I just had to be different!

At the time my Dr finally prescribed prednisone, I was in the emergency ward with a horrible headache (that came mostly at night) and had me eyeing the second-story window as an escape! It was all very emotional which I had prided myself as not being my way of being before this all began!

Clarbeston profile image
Clarbeston in reply toLIVEORDIEHEREIAM

Sorry to hear you had to go through all that. My only symptom is the headache. I took 10 mg amitriptyline last night as prescribed and have been free of the pain all day today although it has returned this evening in time for the next dose. I hope you continue to improve. Best wishes.

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