Facial Pain update.

I’ve got an appointment with my GP, in a month!! First available appointment with the GP who referred me to the neurologist. I decided that trying to go straight to the neurologist perhaps isn’t the right thing to do. What if my symptoms are being caused by something else? Anyway, the receptionist was very apologetic and quite concerned about me. She suggested I ring every morning at 8.30am to see if there has been a cancellation for my GP. I simply don’t have the energy to go through it all with another GP.

My symptoms have changed somewhat. The trigeminal neuralgia has eased a lot. I still have some tenderness on the temples, jaw pain, and ear pain. Shortly after my original post, I began having pain in the back of my neck spreading up across my scalp and stabbing down to my eyes. I was sitting in the car, waiting for my husband, when I realised there were hundreds of little sparkling flies zooming around outside. Fascinating. I have a headache all the time. The neck pain (burning) varies in intensity but it generally wakes me up about 5.30am. I have probably had about ten headaches in my entire life (57 years) before now.

I’m also having problems eating. The mechanics of swallowing are quite hard and my mouth sometimes won’t open wide enough and chewing is difficult. I have noticed things don’t taste right too.

I’m sorry for rabbiting on here but it’s good to say it all to someone. I’m just getting on with the usual stuff I do but I’m feeling increasingly tired and spaced out. Thank you to anyone who reads this.


Hi Helen

It does sound neurological to me (not a doctor, just going by what you’ve said).

I understand that our GPS are under a lot of pressure, but waiting a month to see the GP, then being referred to another neurologist, then waiting again, actually doesn’t sound terribly sensible.

If you can’t get a Neurology referral any sooner than in a month, you might be better off bypassing the GP and seeing the original neurologist again. But this time, have all the symptoms that you’ve had written down, with approximate dates as well as the length of time before symptoms have subsided. Or of course whether anything has remained.

Ask the neurologist for an MRI. Or a referral to an MS specialist, depending on what the neurologist thought about your ongoing problems.

Or of course, phoning everyday until you see a GP who can refer you to a more useful neurologist.

No need to apologise about ‘rabbiting on’. You have clearly got problems and you need to share them. We are always happy to help us we can, even if it’s only by sympathising.


Hi Sue,

Thank you for replying. As I was writing my post I was thinking, why don’t I just ring the Neurology Dept at York and see what they say? I’ll do that in the morning, day off tomorrow. If they tell me I have to be re-referred so be it, but it’s worth a try. I’ll update with any news.


I rang the Neurologist’s secretary this morning. She looked at my notes and told me he had discharged me. She asked about my symptoms and said she would have a word with him and get back to me as soon as she could. Nothing yet but no news is good news.

Helen, I don’t know if your gps surgery works the same as mine, but I have found asking for a phone call from gp is quite instant.

I hate talking on the phone and much prefer face to face, but…

also if what you say to them makes them feel they need to see you, at my gps, they get you to come in and slip you in between other patients.

Good luck, don’t sit back & wait for it to all happen or you will be in this position for years !

Hi Sarah, thank you. Nothing from York Neurology yet. I will ring my GP tomorrow early to ask if my GP has had a cancellation. I was sitting in an evening meeting tonight thinking how much better I felt when, bang, the pain in my neck started with shooting pains up and over my scalp and I suddenly felt so ill, just like that. I made my excuses and left. I just had to get home. I can’t carry on like this so I will begin to agitate beyond my usual laid-backness:)

A week on from my initial call to the Neurology dept at York…I just had a call from my GP surgery to say my GP cannot see me on the 10th April but will see me on the 12th. That prompted me to call the Neurologist’s secretary again. She said that, as he discharged me last time (something I was surprised to hear), I do have to go through the whole process right from the beginning. I can write to him if I want and that may speed the process up a little as, once he has received the GP’s letter, he may agree to see me at a follow up appointment rather than a new patient’s appointment.

I’m not really sure how that’s going to work. Last time, I received a call from a central booking system offering me the choice of three hospitals so I don’t think the referral letter will go directly to the previous neuro anyway. I think at this point I am going to just wait to see the GP and then ask for a referral to Middlesborough, where a Neurologist has been recommended to me.

I am currently feeling quite a bit better, although I think it’s amazing what we can get used to and how quickly! My sense of taste is now all to pot so very poor appetite and I still have, what I believe to be, occipital neuralgia. Feet are numb wet sponges again. Ho hum. I’m not anxious in any way. Just a little frustrated.


Amazing! The neurology dept. at York rang me this morning to say the neurologist has decided he will see me without another referral after all so I’m going in three weeks which is amazing. I am going to ask for an MRI and we’ll see where that gets me.

Hi Grandma, thank you for your reply. Yes, I am keeping a symptom diary. It’s amazing how quickly you forget once you begin to feel better. I’m just pleased that I’m back on track again. Last time it took five months from GP appointment to seeing the neurologist so three weeks is fantastic. I’ll update once I’ve seen him.

I drink Barley Cup which is truly disgusting to me at the moment, as is tea, so I am on cold drinks although last night I had a hankering for hot Ribena (don’t know where that came from) and my dearly beloved went and bought me a bottle.

Helen x