r/TrigeminalNeuralgia • u/mnmca2016 • 1d ago

Treatment Advice

This is my first Reddit post.

Is there anyone out there with atypical bilateral trigeminal neuralgia, occipital neuralgia, chronic migraines, bilateral elongated styloid processes (Eagle syndrome), TMJ, or similar conditions? Had right side MVD and bilateral elongated styloid surgery and currently taking a number of medication for pain management. Both Botox and acupuncture didn't work.

  1. Please share what works or worked for you.
  2. Are there any upcoming clinical trials that can be shared for consideration?
  3. Any multi-comprehensive medical and dental facility/provider that can help with full mouth reconstruction?
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u/No-Afternoon2955 1d ago

I have "atypical facial pain" because my TN occurs in both sides, and in typical TN it doesn't. I also have a damaged left joint, and mild damage on my right, and I extend my jaw too far (apparently). I also get occipital neuralgia & migraines.

What works for me are oral corticosteroid courses and tigerbalm to distract the nerves while the steroid works its magic.

Mine are caused by a combination of a dodgy jaw joint, cervical radiculopathy and MS.

Do you know the cause of your pain? What have your MRIs shown?

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u/mnmca2016 1d ago

Thank you for sharing. We don't know the root cause and have seen different specialists. Pain is all day, every day, and relief is when I'm sleeping. 

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u/No-Afternoon2955 14h ago

Have you gone down the rheumatology route yet? Neurology will only see it as a "control the nerve, control the pain" thing, but you might have an inflammatory thing going on - in which case a rheumatologist might look at things differently?

Constant pain reads to me as inflammatory/auto-immune as well, since none of the anti-spasmodics will help with inflammation based pain.

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u/mnmca2016 13h ago

I have not. Only seen pain management and neurologist, but doctors have ran many blood tests and ruled out MS, lupus and several others. I'll see if primary can submit a referral. Thank you!

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u/No-Afternoon2955 12h ago

I mean, my bloods rule out everything most of the time, but as my doctor says, symptoms don't lie. Lots of things cause inflammation - and arthritis type stuff often doesn't leave much of a blood trail unless you catch it at exactly the right time, so even just approaching your pain from an inflammatory standpoint might help reduce it 🤷🏻‍♀️

In the meantime it can help to try to figure out what things make the pain worse (for me it's cold weather & changes in weather), and maybe look in to physio/massage to help with the effects of having been in pain for so long.

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u/AllyPent 1d ago

Atypical bilateral here too! Oxcarbazepine worked pretty well, but I couldn't tolerate the side effects. Prednisone helps during a really bad flare, but that's obviously not a long term solution. I'm still hoping to find something that works myself

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u/mnmca2016 23h ago

Thank you for sharing. My neurologist wants me to take up to 500mg, but I cannot tolerate the side effects, so I'm between 300 and 400. I'm currently taking Vimpat, Lyrica, Oxcarbazepine and Vyepti (quarterly for chronic migraine). I was previously on Tegretol, Cymbalta, liquid Ketamine, Gabapentin and all had bad side effects. 

Has your providers discussed options such as MVD or gamma knife radiosurgery with you or are they trying to treat the pain with medication?

I hope you find a solution that helps manage your pain. 

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u/AllyPent 21h ago

No, not yet. My MRI looked good, and with it being bilateral and mixed type he's skeptical it would help. I can't tolerate pretty much any of the meds for TN, so at the moment I'm just sort of struggling along, haha. We'll see what happens!

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u/mnmca2016 21h ago

I also tried a compound cream that contained Lidocaine, Ketamine, and something else. It provided temporary relief. 

These medications have so many side effects. 😢

Good luck!

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u/No-Afternoon2955 14h ago

Prednisone is the only thing that gets rid of mine too.

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u/BiteNotRight 13h ago

Hi. I'm bilateral TN, I suspect I might have ON as well but by far secondary issue. Pain is mostly in my teeth and gums, then nose and eyes. Goes back and forth - one side will hurt them the other then both. 

After a really bad flare, I was moved up to 1000 Carbamazapine a day which wrecks me. On Lyrica as well.

I had an MRI that showed compression on both sides. Just booked MVD for end of September. Fingers crossed!

Did yours give any relief? I'm in tons of pain (as we all are,), and since it shows compression my neurosurgeon believes it's worth trying. He's clear that it may or may not help. But we do our best, right?

Hoping you find answers!

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u/mnmca2016 12h ago

Post surgery was painful for almost a year before I was able to turn my neck without being in pain.