So sorry that you’re struggling with this, it must be really hard with little ones too…
As the others have said, the best way to get diagnosed is with a CT of the head & neck. I’m not sure if your GP can refer you for a CT or if you’ll have to try & get the consultant to- unfortunately as ES is quite rare, many doctors are unaware of it, but your symptoms do fit so it would be worth getting one done to rule it in or out. There’s a section titled 'Common symptoms and possible explanations in the Newbies Guide Section so you can see the symptoms you mention are normal for ES. We suggest that maybe you print off one of the research papers which explains the symptoms of ES- there’s links in the Newbies Guide Section- to show the doctor, who hopefully will take it seriously. The vagus nerve can also be compressed by the styloids, which can cause anxiety, although obvs having an undiagnosed condition can do that too!
It might be worth trying a different nerve pain medication if you don’t think the amitriptyline’s helping- there are others, like Gabapentin, or Carbamazepine, you could try instead, although they can take a few weeks to build up, so if you’ve not been on Amitriptyline very long it would be worth sticking with.
Other things which can help are either heat or ice on your neck, sleeping partly upright, muscle relaxant medication like Baclofen. Some US members have been able to get lidocaine patches or topical cream which has helped, but I’m not sure if we can get those in the UK. Steroid and lidocaine injections can also help into the tonsillar area- some doctors do this as a diagnostic tool too, but they don’t always help. This would have to be done by an ENT though.
Mr Axon at Addenbrooks in Cambridge is really experienced with ES, but he does have a long waiting time. It’s a way for you to travel too! Dr Jonathan Hughes in London has treated some members, so might be worth seeing if you could get a referral, the doctor we know of in Reading seems to have been reluctant to treat people recently, but might be worth a try. There’s also a doctor who at least one member has seen in Bristol so wouldn’t be too far, he might be worth a try too? Here’s a link to the Doctors List anyway:
Doctors Familiar With ES Countries Outside US Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope the tips can help you, & knowing that you’re not alone…sending you a hug 
1 Like