Glossopharyngeal neuralgia

[UCTD]

Hell everyone, just wondering if any of you have experienced Glossopharyngeal neuralgia? I get severe pain left side of tongue, jaw ,base of tongue and throat sometimes radiating to my ear. It usually appears without warning, and is often associated with swallowing. I have limited systemic scleroderma and normally suffer from a dry mouth. I use Bioextra mouth spray and mouthwash. The pain is excruciating when it happens and paralyses me.

[Hidden]

Yes I get this too although in my case it’s blamed on the Sjögren’s side of my overlap CTD. Mine is intermittent too. It’s been better since my inflammation levels dropped to slightly elevated on mycophenolate.

I don’t know if it will help but my neurologist is giving me an occipital nerve block for cervicogenic headaches/ migraine in a few weeks time. He did warn me it’s a different nerve to the occipital one and thinks I have trigeminal neuropathy as part of my package. I’m hoping perhaps it might help the neuralgia/ neuropathy as well though. It is like having a heart attack in the throat isn’t it? Scary stuff you have my sympathy x

Ps a link that might be useful as it’s mentioned here. For me it’s definitely linked to the cold and Raynaud’s and I think Iloprost infusions have helped. hopkinssjogrens.org/disease...

2. Trigeminal Neuralgia and Glossopharyngeal Neuralgia

“Sjögren’s syndrome can cause a numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.”

[UCTD in reply to Hidden]

Thanks so much!! My sister has Sjogrens, and I seem to have some features on top of everything else. Your advice is very much appreciated . Good luck with your procedure.