Hi everyone,

My name is Sophie and I have arrived here after years of searching for answers about my ongoing headaches/neck pain.

I have been suffering for around 10 years and my doctors haven't yet diagnosed me despite numerous visits.

I have resorted to doing some detective work of my own so I would be SO grateful if you could see if any of your symptoms are similar to mine.

-In the base of my skull where it meets the neck
-Sometimes radiating to ears, throat (occasionally i can feel a related sensation in my nose)
-Intense throbbing, pressure, burning pain
-Base of skull feels swollen and tender
-Sometimes affects hearing - similar sensation to ear popping
-I feel dazed and I don't want to talk

-Period where i have the headaches/neck pain will last roughly 1 week - sometimes 2 weeks
-I can go for months without any symptoms

-Lasting around 5-10 minutes a time
-Come on quickly and escalate to maximum pain within 1 minute
-They come and go roughly 10-20 times a day
-Wake me from my sleep roughly 4 times a night and in the morning
-Ibuprofen / paracetamol / ice help


Thank you so much in advance for reading As I said I would love to hear if anyone has had a similar experience.

Hello Sophie,

Welcome to NeuroTalk!

I'm sorry you're dealing with these headaches and pain. Sounds awful for you.

Sorry about all the questions below... I'm just wondering which of the forums here would be a next step to check out.

Have you had any scans done on your neck?
Have you ever seen an ENT?
Haven't had a concussion?
Do you get dizzy at all?

p.s. I'll leave the Headache forum link below for starters.
http://neurotalk.psychcentral.com/forum32.html

Thank you

Have you had any scans done on your neck?
I had an xray recently but no results - doctors are reluctant to refer me for scans which makes it even more difficult to diagnose!

Have you ever seen an ENT?
Again doctors are reluctant to refer me to a specialist

Haven't had a concussion?
Never

Do you get dizzy at all?
Sometimes yes - as if my head has been left behind!

Well, if I was in your situation and dealing with this on and off for so long, I would find a new doctor.

I must have gone through 10+ different doctors about the same issue!! I don't have a fixed doctor but they all seem to have the same attitude towards headaches and don't take them seriously.

Unfortunately in the UK there is a process and protocol you have to get through in order to be referred to a specialist or to have medical investigations....

I'm pursuing them more now since the pain is getting worse so i really hope that will give them a push to investigate.

In the meantime my own research helps me to understand the options...

Gosh, how frustrating for you. I hope you find some answers Sophie. Great group of people here so I'm sure you'll get some other advice plus we have quite a number of other members from the UK who will know the system and protocols that you're dealing with. I'm in Australia so it's somewhat similar in the public health system here too.

Hi Sophie,
See your GP and tell him ALL your symptoms - write them down - then ask to be referred to your local Headache Clinic. They are usually run by Neurologists (something they are good at) and their staff and it is a perfectly reasonable request on your part. As you can tell I am in England - Yorkshire.
If your GP won't agree to this perfectly valid request after 10 years then register with a new one.
If you don't want to change you can complain to your Practice Manager in the first instance - that will be the Senior Doctor. Failing that you can complain to the NHS directly. Here, there is no excuse for shoddy GP services - that's left to Neuros and overworked Hospital Depts.

Dave.

Thanks Dave, I went a few days ago in desperation after the bank holiday weekend and asked specifically to be referred to a neurologist but unfortunately I didn't get anywhere with it.

It sounds like you've had similar frustrations!

I will definitely follow your advice, I think that sometimes it takes a bit of a push to get somewhere unfortunately... I have another appointment booked with a different doctor so hopefully will get somewhere this time!

Thanks again

Welcome sophiec.