I'm fortunate - even though my MRI was normal, my neuro did not think that did anything but rule out things like tumor, MS, and that ilk. It can show some problems, but it doesn't rule out vascular compression - even if you have it with contrast dye, as I did.
Good luck in finding help sooner than later!
Hi Virginie
I live in Sydney and your story and timing of GPN is very similar to mine.
The pain that I have is almost constant now. It is a painful throb at the back of my mouth/throat on the right side of my face. i get striking pains which last for up to a minute which can be set off by a number of things - swallowing, eating, drinking, talking, yawning etc. the pain is excruciating (as you know). it feels like the right side of my jaw/face is inflamed - when this is the case it is usually worse. I struggle to eat or drink anything (been this way for the last week). Currently I am taking Lyrica (225mg twice daily) and Panadeine Forte(2 tablets every 6hrs) - clearly this is not working and I am hanging out for my next appointment to see a neuro…anyway below is my story.
I think mine was triggered by a cold which I sufferred after competing in a race in Nov14. It started off as sporadic pain at the back of my mouth (right side). I went to a GP who prescribed me antibiotics. When then pain did not go away after 1 week, I went and saw another GP who suggested it may have been a fish bone struck at the back of my throat but referred me to an ENT. Trying to get in to see an ENT in Sydney is ridiculously hard - I was told the wait was 3 weeks for the ENT which I had been referred to! Luckily I knew someone at my sons school who is an ENT. He saw me immediately but could not find anything wrong. He suggested reflux burning the lining of my throat and put me on reflux meds. In the mean time, I saw my family doctor who ordered blood tests. The blood tests did not show anything other than I had inflammation (I had told them that the right side of my mouth was inflamed!)
My mouth and throat were still causing issues when we went on hols to early dec. My family doctor organised for ct scans which I had done whilst on hols. Luckily we met a family from school who were doctors. She saw the pain that I had and suggested that it may have been a form of trigemal neuralgia. My ct scans showed nothing also.
After hols, I spoke to my GP and ENT I mentioned TGN and they suggested that it was GPN instead. I was put on a course of Lyrica (75mg twice daily) which had an immediate effect of taking away most of the pain. My GP referred me to a neuro. The neuro discussed the cause of the pain, poked and prodded me for a few mins and said that he agreed with the diagnosis but that it would go away in 5-8weeks and to come back if it did not.
I had an mri done after this visit which showed something on the right side of my tongue. Based on this plus the fact my and other factors my ENT referred me to another ENT who did a biopsy because they were worried about the inflammation. The biopsy was clear.
The rest of dec-jan went by without any problems until this week. The pain started all over again, slowly at first leading up to constant pain with more frequent “attacks” as I described earlier. I went back to see the ENT and had another ct scan done because he felt it may have been Eagles syndrome. The scan came back yesterday showing the styloids were longer than usual (3.4cm) but not a “classic case”. The ENT said that based on this, it was unlikely to be the cause and that he would need to do more tests before he would consider an operation.
I have a visit to the neuro this Tuesday (10 February). Hopefully he will take more notice of my history and have a proper look at the Mri. Hopefully he has some experience with GPN and can suggest a plan of attack to initially manage my pain through medication and do more tests to isolate the nerves which may be causing the pain, and possibly an operation if required.
Given the amount of "hopefully"s above, I am surfing the net and looking for neurulogists and neurosurgeons in Sydney who may have had experience dealing with GPN. From what I have found, Macquarie Neurosurgery (mqneurosurgery.com.au) seem to have a lot of the tools for testing/diagnosis. On the neurosurgeon side, Dr Biggs seems to have a pretty good cv (nsn.com.au). I’ll continue searching…
I hope that you are feeling better and that my story has helped and that you’ll also be proactive (like I hope to be 
) in getting the correct treatment rather than dealing with the pain. Feel free to contact me directly if you’d like.
Take care
David
Wow, I don’t realise I’d written that much. Apologies for being so long winded!
Hi David - DTSydney
Thank you so much for your messages.Its a good feeling to hear from a fellow Aussie;-) Most lovely members in this forum are from all over the world.
I hope you still manage to maintain a minimal quality of life despite the agonising pain...
I have been formally diagnosed with GPN this beginning of January by Dr Mark Dexter at Westmead hospital ( he is great, I highly recommend). My pain started in November so fairly rapidly.. After many visits to the emergency at the Sutherland Hospital and making me feel like it was all in my head..The ENT team saw me there a couple of times, never detected anything - did not have a clue. Was referred to the ENT at St Georges - never bothered to go as I was booked in with Dr Dexter. It took two MRI to finally reached a proper diagnose. Acupuncture has worked for me and provided me with some relief over Christmas. I find that you must go regularly from 1 to 2 times a week so it ends up to be quite expensive.
Its a long and exhausting journey really mainly because of the lack of awareness and obviously because of the pain. I have learn to adjust my life - have completely banned cold foods, fizzy drinks, ice creams and sweets. Good for the waists ( thats the only positive haha)
Its important also to go on a good quality vitamin b12 supplement , I find that the spray are great and convenient.
Dont worry about your long post, I know too well this feeling. Its nice to be able to share your experiences with people who can relate.
Where about in Sydney are you?
Take care, Virginie x
DTSydney said:
Hi Virginie
I live in Sydney and your story and timing of GPN is very similar to mine.
The pain that I have is almost constant now. It is a painful throb at the back of my mouth/throat on the right side of my face. i get striking pains which last for up to a minute which can be set off by a number of things - swallowing, eating, drinking, talking, yawning etc. the pain is excruciating (as you know). it feels like the right side of my jaw/face is inflamed - when this is the case it is usually worse. I struggle to eat or drink anything (been this way for the last week). Currently I am taking Lyrica (225mg twice daily) and Panadeine Forte(2 tablets every 6hrs) - clearly this is not working and I am hanging out for my next appointment to see a neuro..anyway below is my story.
I think mine was triggered by a cold which I sufferred after competing in a race in Nov14. It started off as sporadic pain at the back of my mouth (right side). I went to a GP who prescribed me antibiotics. When then pain did not go away after 1 week, I went and saw another GP who suggested it may have been a fish bone struck at the back of my throat but referred me to an ENT. Trying to get in to see an ENT in Sydney is ridiculously hard - I was told the wait was 3 weeks for the ENT which I had been referred to! Luckily I knew someone at my sons school who is an ENT. He saw me immediately but could not find anything wrong. He suggested reflux burning the lining of my throat and put me on reflux meds. In the mean time, I saw my family doctor who ordered blood tests. The blood tests did not show anything other than I had inflammation (I had told them that the right side of my mouth was inflamed!)
My mouth and throat were still causing issues when we went on hols to early dec. My family doctor organised for ct scans which I had done whilst on hols. Luckily we met a family from school who were doctors. She saw the pain that I had and suggested that it may have been a form of trigemal neuralgia. My ct scans showed nothing also.
After hols, I spoke to my GP and ENT I mentioned TGN and they suggested that it was GPN instead. I was put on a course of Lyrica (75mg twice daily) which had an immediate effect of taking away most of the pain. My GP referred me to a neuro. The neuro discussed the cause of the pain, poked and prodded me for a few mins and said that he agreed with the diagnosis but that it would go away in 5-8weeks and to come back if it did not.
I had an mri done after this visit which showed something on the right side of my tongue. Based on this plus the fact my and other factors my ENT referred me to another ENT who did a biopsy because they were worried about the inflammation. The biopsy was clear.
The rest of dec-jan went by without any problems until this week. The pain started all over again, slowly at first leading up to constant pain with more frequent "attacks" as I described earlier. I went back to see the ENT and had another ct scan done because he felt it may have been Eagles syndrome. The scan came back yesterday showing the styloids were longer than usual (3.4cm) but not a "classic case". The ENT said that based on this, it was unlikely to be the cause and that he would need to do more tests before he would consider an operation.
I have a visit to the neuro this Tuesday (10 February). Hopefully he will take more notice of my history and have a proper look at the Mri. Hopefully he has some experience with GPN and can suggest a plan of attack to initially manage my pain through medication and do more tests to isolate the nerves which may be causing the pain, and possibly an operation if required.
Given the amount of "hopefully"s above, I am surfing the net and looking for neurulogists and neurosurgeons in Sydney who may have had experience dealing with GPN. From what I have found, Macquarie Neurosurgery (mqneurosurgery.com.au) seem to have a lot of the tools for testing/diagnosis. On the neurosurgeon side, Dr Biggs seems to have a pretty good cv (nsn.com.au). I'll continue searching...
I hope that you are feeling better and that my story has helped and that you'll also be proactive (like I hope to be ;) ) in getting the correct treatment rather than dealing with the pain. Feel free to contact me directly if you'd like.
Take care
David