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Vicks7005 12-13-2015 05:38 PM

Trigeminal neuralgia now Geniculate neuralgia
Hi 13 years ago I had a succesful MVD for Trigeminal Neuralgia I suffered to the left side of my face for over 10 Years. I tried all the drugs, Tegretol,trileptil,gabapentin awful side effects so decided with mvd. I have helped others locally who local dentist asked me and 2 people at work also and helped them as well local support groups. I even did a magazine article and a 2 page spread for daily express after the mail did a suicide story tn related.I was also a member of this site. All was well and fine untill now, I have been to the Drs 3 times this year with agonising ear pain each time told ear was clear and I went away, the last month I had 2 hrs continual pain then a week later 6 hrs agonising pain, where I look in striking back book and see geniculate neuralgia. Great after being put on tegretol spending my holiday spaced out,awful memory,memory loss, cant drive or function I am now on gabapentin which I may also come off. ENT specialist agreed GN and just waiting for neuro appointment. The thing so far which is different as tn attacks happened every day an went as quick as they came GN could be once or twice a week so far and last hrs. I cannot function on meds and am off work, so I come off meds so I can function and cope with the pain as and when? I am not sure. Does it increase and come more often, I dont know. If there is anyone else who has GN I would love to hear your stories and how you cope, would just be nice to chat with someone that knows what this is like. Many Thanks

Lara 12-13-2015 05:59 PM

Hello and welcome to the NeuroTalk Support Groups. :Wave-Hello:

You could also post on the

Occipital Neuralgia and other Cranial Neuralgias Forum
For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)

Trigeminal Neuralgia Forum

There is also the

Forum Search Feature.

If you type in specific keywords, it will bring up any past posts or threads.

take care.

Darlene 12-14-2015 12:41 AM

Nice to meet you!!
:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Lily23 01-12-2022 09:23 AM

I'm in the process of waiting for a ent appointment as for 2 years I have pain in my ear and after drs after drs keep prescribing tablets bc they think it's an ear infection I kept telling them it's nothing like that it's something worse than tht, ice pick pain in Yr ear and half of your face n your teeth and I can't work or live my life bc Ithe pain is so intense, and I can't eat bc the pain in my teeth hurts so bad, the put me on amitriptyline but it's giving me bad side affects and I just don't know how to deal with the pain bc the drs are not listening n god knows how long it's gonna be before I get my ent letter is there anyone who can advise me how I can deal with the pain so I can work

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