Which healthcare service should I contact with this?

[JamieJ93]

Hi, I was born with ventriculomegaly (enlarged brain ventricles) which collect more fluid than with normal sized ventricles.
I also have benign intracranial hypertension along with stage 1 papilledema
I have had 2 lumbar punctures due to increased pressures.
2 years ago I was due to have neurosurgery where they drill a hole at the bottom of your skull to let CFS drain more freely, however this didn't happen.
Now every single day I am waking up with excruciating headaches where I am unable to be woken by husband straight away like usual.
Pain behind my eyes are unbearable (especially the left)
The base of my neck also hurts.
It's just getting worse and worse, I also keep feeling dizzy when I move my eyes.
I know this isn't an aibu but it gets more traffic but I don't want to misuse services that are not appropriate,
Thank you

Call 111 and follow what they say.

Are you still on the waiting list for surgery? If so can you contact the secretary of the surgeon?

If it is an emergency contact 111 and they will likely direct you to A and E.

Your GP to chase up the neuro referral.

Presumably you are already under a consultant? I’d be chasing them up or go back to GP and ask for a fresh referral

If you are still under the neurosurgeon, ring their secretary and ask for an appointment, or sometimes you can speak to the specialist nurses. Otherwise GP appointment/online consult asking for a referral

I think it’s really difficult as no one (or at least very few) will be familiar with risks of not having had surgery for 2y etc for this specific condition - I’m certainly not. Personally I would book same day GP appointment Monday and ask if you need to go to A&E or whether they can do an urgent referral. Explain you have acute symptoms on the phone as they often don’t offer same day appointments otherwise. If you are under a consultant, phone their secretary.

However, the struggling to wake sounds concerning and, if that persists or worsens, I’d present to A&E. Anything that appears to be an emergency should be an A&E visit. In general though, GP would be organising follow up for chronic issues and if under a consultant they are first point of call for related issues.

If your gp service is good I'd do an online message tonight and expect a call on Monday. If your gp is rubbish I'd consider 111 first thing tomorrow and hope for an out of hours appointment

Did they not offer you a shunt?

For what its worth I think if this is something that's been worsening noticeable over days (or shorter!) you should just goto A&E and be seen face to face by a doctor. There's no way 111 triage flowchart is going to be able to tell you it's nothing to worry about and wait for gp.

If however this has all be the same for months, that you've been reviewed with these same symptoms by your gp and there's a referral/plan in place, then I'd wait to see your gp again.

it's sounds like you're in the former really.

You're not wasting services, that's exactly why they are there.

Surely you are already under the care of a consultant? If so ring their secretary and get an appointment.
Or
Call your GP and tell them what you have told us, they will refer you to see a consultant.

But do still sooner rather than later, you don't get points for suffering, you need to get this sorted (or at least on the waiting list to get it sorted) now!