Chronic headache - is it Trigeminal neuralgia/Migraine/something else?

[Ana_Q86]

I am a 30 year old female. I've been suffering from chronic headache for 3-4 years now. Paracetamol and ibuprofen don't help.

I first noticed I get burning headaches in my temples and eyebrow line every single day after lunch. It's not just the act of eating but could also be the cold air flow in the canteen that was the trigger, and also drinking very cold water. On one occasion I went to the A&E but had a normal CT scan result.

The headaches were considerably less in intensity while I was writing my thesis from home. They re-appeared a year ago when I started a new job, coinciding with an unidentified infection (either herpes simplex/zoster), and are triggered by: putting make up with a brush, washing hair, cold air, eating lunch, talking for long periods of time. The headache is burning pressure in nose root, with freezing burn sensation between nose root and uvula. Burning sensation is also bilateral behind the eyes and in the temples, and at the top of the face, following hairline. Nose tip gets very cold every time. Sometimes I get shooting "electric" pain in temples. Sometimes my throat also hurts during the headache.

I occasionally have shooting electric pain in other body parts, mostly limbs, fingers and toes.

I have previous history of migraine (typical pounding one sided pain, quite unlike what I have now).

I was first reffered to ENT doctor who thinks it is not sinuses but a neurological problem. So far I only had blood tests which only revealed I have congenital neutropenia but no signs of infection.

GP first perscribed Amitriptyline which didn't really help. I then tried Gabapentin which helped somewhat, but I stopped taking it because of side effects (insomnia, constant sore throat). The only thing that relieves my pain to some extent is inhaling warm steam. I am awaiting neurologist appointment and am still undiagnosed.

From what I can find online my symptoms match atypical trigeminal neuralgia, but cold nose fits more with migraine. Some autoimmune disorders might also have similar symptoms - and might link with my neutropenia (about which nobody seems concerned). I am also very confused about eating lunch as a trigger - it is always lunch and not breakfast or dinner that starts the headache.

As the NHS system is very slow, I am losing hope that anyone will ever discover what's wrong and that I'll have to suffer like this forever. Any advice would be appreciated. Thanks.