Think I have GPN

Hi I’m RaRa and I have been having facial pain on and off for about 4 years. First Ibwas told it was TMJ but when I have been researching my pain I think I have TN. Went to my Dr as pain was getting worse and he agreed with me and referred me to a neurologist who stated she thought it was GPN? Am now waiting for an MRI. I have started on Tegretol and lyrica and these have helped the shock pains and can now sleep but have 'tooth ’ pain and pain when eating or talking. I also have high blood pressure so goi g to Dr today to get medication for that…my husband thinks that may also help my pain as he has read high blood pressure may be a risk factor. I am 62, a paediatric nurse living in Launceston Tasmania. Anyone else Living in Tassie?

Hi Rara
I don’t live in Tasmania,but I would lobe to visit Maria Island one day.My son was there years ago and he told me I should go.
Sounds like my kind of place.
A suggestion-if you do not get a response to the Tasmania thing in a week or so,you might want to use that as the subject line.
Wishing you as much wellness as possible

Thanks ellen5 I will use Tasmania in the topic lune next time. Tasmania is a beautiful place to visit. Hoping for wellness for you too

Hello Rara. I will be in Launceston Oct 14th to 18th. Coming over to scatter my brother’s ashes. Have had Gpn for years. If you would like to catch up for a cuppa I would be free morning of 16th. Not sure how to message tel number privately but will try. Regards Warrior Woman( Lisa)

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Get your teeth checked by a dentist, but 9 times out of 10it is NOT the teeth, but the Trigeminal nerve being compressed along the upper jaw radiating into the teeth. Many people get perfectly good teeth removed and the pain continues, so dont be tricked into getting an extraction.

Hi warrior_woman would love to meet you for a cuppa …not sure how to leave phone no: privately but I am on messenger as Robyn Chugg if you are on that and we can message then . Thanks for gettinf in touch. Does gpn get any better…my attack right now is getting worse not better and off work now for a month to try and sort things out. Hooe you are well

Hello Rara

I envy where you live. We are desperate to move to Tasmania, but it’s sometime off yet. We’re in Perth. I’m a long-term sufferer and have had a failed MVD. I am looking at another surgery in Melbourne next year with Professor Kaye who has sub-speciality expertise in GPN and offers a more aggressive surgery. I’ve been through all the drugs in the world, and the only thing that’s really worked for me is Clonazepam…none of the brain drain and cognitive problems that come with the all the other drugs. Here for support if you need it. Sorry things are so hard. Beware the tooth drama. I had some unnecessarily extracted and I also got the TMJ diagnosis for a few years. It took more than 5 years to get a diagnosis. Damn Perth!

PS Also meant to say - amazing that a neuro came to that conclusion so quickly. Post-diagnosis, I have had neuros who told me that they’d never heard of it! Helpful!

Hi somethingforkate yes Tasmania is a beautiful state but Iv been wanting to visit WA and perth too…perhaps some day. Thank you for replying to my post. I have only just started this medication journey and dont like it at all! Not sure when i’ll get back to work…just wish we could get rid of the pain when eating and talking…my brother in law said jokingly perhaps its Karma. I was surprised when my neuro said it was likely gpn…maybe because she said she had see a few others with it. Did your MRI show anything and what is the surgery you are thinking of getting done in Melbourne? When is it happening? All the best with it and hope you keep in touch…it is great to talk to people with same issues and it is also great right now to text and not talk !!
Hoping wellness for you :slight_smile:

Thanks Nursey I have had them checked a few times with xrsys ($$$) and they are all good !! How long have you had gpn and what works best for you ? Hope you are ok now x