6 weeks of headaches on the side of the tumour and they’ve been getting worse.
I’m due to see the original ENT consultant on Wednesday next week but and ideas why now?
It’s over 12 months since the Gamma knife and possibly due to Eustachian tube disfunction. The pain is sometimes sharp and intense like that when descending on a flight but can also be like brain freeze pain which, unlike the other pain is more general on the tumour side.
GP has doubled my mometasone prescription which has helped but only slightly.
The pain is random, often lasts up to 3 seconds and I might have multiple episodes an hour.
Genuine thoughts please.
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GGourmet
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Do you have a clinical nurse specialist in the department that ordered your GK? I’d give them a call. I had radiotherapy in Jan/Feb and a good MRI follow up. I’m not due for another MRI/consult until next Feb, but they told me to contact the nurse in the meantime if I started getting headaches or other changes to symptoms x
I am able to contact the team and the ENT consultant I’m seeing next week is in the team.
I’m fairly certain it’s mostly Eustachian tube but know that the tumour presses on a blood vessel too, not just the nerve. I’m thinking that this may be caused by fluctuating blood flow just like a migraine.
Turns out this was Trigeminal Neuralgia caused by my tumour. On Carbamazapine 300mg/day now which appears to be right dose for me. This will hopefully last only 2 years. If I’m unlucky and the tumour doesn’t shrink in that time, this might be a lifelong medication.
I'm glad they've found the problem, and the right drug to get you through it. Fingers crossed it will resolve itself in due course with the tumour shrinking. Happy New Year xx
Try not to sleep flat in bed . Try to haave at least 3 or 4 pillow to raise you head above your body. When you lay flat your blood rushes to your head and if you have toothache or luch us brain tumor you will get headaches. Try it and see if it works, what have you got to lose. Gives another meaning to keep you head up, Merry Xmas
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