Hi Harry,
I’m based in Manchester and I know how you feel with regards the NHS.
Things had gotten so bad, I finally went into a GP’s office and said you have 2 choices; call the police or refer me to a neurologist because I’m not leaving!!!
Got the referral and very long story later, I’m finally under professor Goadsby’s neurology dept at Kings College Hospital in London. He’s written the book when it comes to headaches, migraines,trigeminal neuralgia or in my case, trigeminal autonomic Cephalalgia. You can request/demand that your GP refers you to any hospital. I have all my appointments remotely and the biggest benefit, they have a specialist headache nurse you can email when things get bad.
Been needing a rant so here goes, I have SUNCT (Sort-lasting unilateral neuralgiform headache with conjunctival injection and tearing). Ever since I can remember I’ve had headaches but it was always fobbed off. The dental pain I had was never discussed with the GP and dentist never thought TN. By the time I had gotten to 13, I knew I was in trouble, there’s a reason it’s known as the suicide disease. I had numerous MRI’s before I turned 18 and several after - if only one of the MRI requests had the box ticked for ‘with contrast’ the vascular loop (blood vessel so close to the nerve that it can touch) I have would have been diagnosed in my teens and not in my 40’s.
So after 20 years of self medicating, many GP’s later, the pain gets so torturous I can’t move, let alone work or socialise or even eat. Just being alive hurts; you can’t scream because that makes it worse, you can’t tense or cry, all you can do is try to suffer in silence. So I go to my latest GP and I’m given Carbamazepine, which made things worse, then gabapentin and when that didn’t work I was told by the GP that there was nothing more they could do and I should go to A&E in future. 3 A&E visits later, the last with a nurse laughing at me, I went to a new GP and demanded the referral.
I was then referred to one hospital where I saw a consultant neurologist whom suggested I had a Trigeminal Autonomic Cephalalgia and likely SUNCT and required being seen in the headache clinic. I hear nothing in a week so I desperately call and told I haven’t been transferred and I see a 2nd neurologist. He says’ I’ve seen thousands like you and it’s Chronic Facial Pain’! I called BS and said i wanted another opinion, which is all stated in their letter. Another week goes by and nothing? Call again and now I get put on the list. As this was now covid lockdown, everything was over the phone. 3rd neurologist says migraines. In between I beg my dentist to remove several of my teeth (glad they said no), 4th says TAC so start meds to rule out Hemicrania Continua, then after screaming desperately for help, 5th and 6th were no help until KCH when I’m put on Lamotrigine which was a game changer and I’ve rarely been above a 8 on my pain scale since. It has taken me the last 7years to finally have a pain management team around me but what an effort!!
My GP is in Huddersfield, the only GP I’ve found with knowledge of the condition so after speaking to a neurologist we can make any medication changes immediately without having the neurologist’s letter first. My dentist is in Manchester- I have to see first to rule out any dental issues. My neurologist is in London. This year I finally found my Anaesthetist so when all the medications/treatments I’m on cease to work, I’ll need a neurosurgeon. Hopefully be at dignitas before then.
My advice, to get to the right diagnosis you’ll need to rule out other possible causes so see GPs that have an understanding of the condition you’re trying to rule out or if diagnosed, help you manage them.
Take control of your pain management and nag everyone - DON’T go to far, we need them more than they need us.
Good luck in your search for answers, I hope you find them.
. I’m currently going through the process of changing GP now as mine has been really bad to be honest. I also paid to see a private maxillofacial specialist who said it would be pointless getting an MRI done as we wouldn’t see anything that my dentist scans hadn’t seen.