Trigeminal Neuralgia: Does anyone know if it is... - LUPUS UK

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Trigeminal Neuralgia

Babyshoes3 profile image
16 Replies

Does anyone know if it is possible to have lupus related trigeminal neuralgia if inflammatory markers are normal.

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Babyshoes3
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PMRpro profile image
PMRpro

I doubt CRP is raised in trigeminal neuralgia - it doesn't actually cause any inflammation of the tempromandibular joint which would be required to have an effect on CRP. I might be wrong though and stand to be corrected if so.

Babyshoes3 profile image
Babyshoes3 in reply toPMRpro

Thank you

Hoofprints profile image
Hoofprints in reply toBabyshoes3

I suffer repeated shingles and trigeminal neuralgia intermittently (sometimes also extreme pain in jaw joints, but not related to the shingles as far as I'm aware). I've never had raised CRP or ESR and I don't think that inflammatory markers are necessarily raised with this problem. However, I'm assuming there must be some kind of local inflammation or disruption to the nerve somewhere to create the pain. I hope that your pain goes away soon. By the way, if you have had shingles, this could have triggered it and sometimes you can get repeated shingles, as I do where, you experience all the rotten feelings of having shingles, but without a visible rash (sine herpete I think it's called). Maybe worth discussing with your doctor if the problem persists. Good luck

Babyshoes3 profile image
Babyshoes3 in reply toHoofprints

Thank you for your kind reply. I have never had shingles but I am wondering if my trigeminal neuralgia is connected to my lupus. Only recently have had a diagnosis of TN but with no explanation of what is causing it.

Hoofprints profile image
Hoofprints in reply toBabyshoes3

I hope you get answers.

in reply toPMRpro

I think you’re right Pro - if there’s any inflammatory process relating to TN I think it’s either neuro inflammatory or localised.

PMRpro profile image
PMRpro in reply to

It is there - but it simply isn't enough to trigger the liver processes

in reply toPMRpro

Yes - this is what I have thought. I did wonder if my CRP and PV rise with small fibre neuropathy flares in my mouth and also with simmering dental infections. But actually I haven’t found that dental extraction of the offending molars has affected my CRP much. It’s the systemic flares that are reflected by raised CRP for me rather than the localised ones.

CecilyParsley profile image
CecilyParsley

I have intermittent Trigeminal neuralgia and intermittent Tempromandible joint disorder without raised inflammatory markers. I have just been referred to a specialist by my dentist because I have recurring intense itching in my left ear and intermittent problems opening my jaw. It is a mystery to me what triggers it sorry I have no answers . Good luck

Babyshoes3 profile image
Babyshoes3 in reply toCecilyParsley

Thank you. Seems like its a bit of a minefield.

CecilyParsley profile image
CecilyParsley in reply toBabyshoes3

Yes I sometimes think my body is punishing me. I have a whole range of issues that come and go, are investigated and nothing series found such as choking, hand spasms, wrist weakness, lack of grip, severely swollen feet and ankles, heaviness on my chest, breathlessness. I have wondered if I am a hypochondriac and asked my GP to refer me to Psychiatry at my lowest because it is relentless.

Heatheric profile image
Heatheric

I have lupus and have also developed trigeminal neuralgia. I was concerned about any potential link with lupus or other conditions such as MS. My medics referred me for MRI scan to rule out MS but not aware of any link with lupus. It seems to be an unlucky coincidence!

Babyshoes3 profile image
Babyshoes3 in reply toHeatheric

Thank you

I’m not sure about Lupus but I do know that Sjögren’s and MS are both autoimmune diseases closely associated with TN. I have Sjögren’s plus small fibre neuropathy and I have intermittent atypical TN ie it affects both sides. My ESR is always high and CRP raised and I have long-standing dental issues which I think are more hypermobile/ EDS than Sjögren’s or overlap related. I don’t think TN is usually inflammation related though - or maybe to neuro inflammation which is different to systemic.

Here is a quote from the John Hopkins Sjögren’s page in case it helps - given that Lupus so often dovetails with Sjögren’s and vice versa:

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.

Medicines which may help alleviate symptoms in small-fiber neuropathy may also have efficacy in trigeminal neuralgia. Such medications may include a class of agents which are typically used to treat seizures, and include gabapentin, topiramate, and pregabalin. In seizure disorders, paroxysmal and irregular bursts of electrical activity in brain nerves may lead to propagation of seizures. Similarly, in Sjögren’s neuropathy, irritative electrical signals produced by nerves in the skin instead of the brain, may similarly contribute to pain. Just as anti-seizure medicines can dampen electrical activity of brain cells, the dampening of electrical activity produced by pain-fibers may ameliorate burning pain. It is important to note that use of these symptomatic medications does not target the neuroinflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered

hopkinssjogrens.org/disease...

Babyshoes3 profile image
Babyshoes3 in reply to

Thank you for the information.

stiff19 profile image
stiff19 in reply to

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