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Lupus and Trigeminal Neuralgia

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Shortly before I was diagnosed with lupus, I was diagnosed with Trigeminal Neuralgia and Atypical Face Pain.  Truth be told, my trigeminal neuralgia is a big reason that I ended up in the process of getting diagnosed because it is a pain that is truly debilitating.  I could push past the sore and stiff joints, the sore muscles, and even the lupus fog for the most part.    Yet, I could not push past the severe nerve pain in my face and head.  When my trigeminal neuralgia flares, it literally feels as though my brain is inflamed and as though I am being stabbed in the head.  Not like a dull pounding migraine stab, but literally, a piercing, hot-searing electrical pain deep within.

I would also get excruciating migraine like pressure, sensitive skin on my face and scalp, and an electrifying stabbing pain in my ear and head.  The sensitive skin feels as though you have a bad sunburn or maybe even rug burn.  My hair hurt.  Each strand was painful.  The slightest breeze of cold air can set it off.  My husbands beard can set it off.  Being sick can set it off and having lupus definitely sets mine off.  I’m still unsure if my TN is caused by lupus, or if the trigeminal nerve is just aggravated by my lupus inflammation, but they seem to like to flare at the same time….and it hurts like hell.

Lupus and Trigeminal Neuralgia

What is Trigeminal Neuralgia?

Trigeminal Neuralgia is an incredibly painful and chronic condition that causes the trigeminal nerve to send electrifying and shooting pain into a person’s face.  The trigeminal nerve is also known as the 5th cranial nerve and is the most widespread nerve on the face.  Trigeminal Neuralgia is also referred to as tic douloureux or simply TN.   It has been repeatedly coined the “suicide disease” by many people who suffer it’s wrath and in various online literature.  Trigeminal Neuralgia is said to be one of the most painful diseases known to man.


Symptoms of Trigeminal Neuralgia

  • Episodes of pain that feels like an electric shock.  It can be severe, shooting or jabbing pain on the face.
  • Can be triggered by things such as touching the face, wind, cold air, chewing, or brushing teeth
  • Shocks of pain can last for seconds to minutes.
  • Attacks with the constant shocks of pain can last hours, days, weeks, and even months.
  • Aching or a burning feel that may occur before the shocking spasm pain occurs.
  • People can experience pain anywhere that is involved with the trigeminal nerve.  This can involved your cheek, teeth, jaw, eyes, and even forehead.
  • Pain with trigeminal neuralgia is usually on one side of the face at a time.  While it is less common to have trigeminal neuralgia affect both sides of the face, it can happen (it happens to me, although it usually only affects one side at a time and we all know how complicated us lupus warriors can be).


Causes of Trigeminal Neuralgia

There are a few causes of trigeminal neuralgia.  Most people Google causes of trigeminal neuralgia and immediately multiple sclerosis comes to mind.  In patients with MS, damage to the myelin sheath protecting the nerve is usually responsible for trigeminal neuralgia in these people.  Another common cause of trigeminal neuralgia is vascular compression.

With lupus, there is not a whole lot of medical literature on the amount of lupus patients who also have trigeminal neuralgia.  Nervous system involvement in SLE has been reported to vary from 40% to 70%.  Trigeminal neuropathy is seldom mentioned as a symptom in lupus but has been observed as the only neurological manifestation of the disease among 2 cases published.

Vasculitis affecting the trigeminal nerve branches, particularly at the sites where they are tightly invested by dura and more susceptible to edema, as well as consequent rise in endoneurial pressure, seems to be a possible pathophysiological mechanism in the context of autoimmune disease.


Vasculitic changes, neural tissue fibrosis, and increased permeability of trigeminal blood vessels seen among lupus patients may increase the risk of lupus patients to develop trigeminal neuralgia.  However, why the trigeminal fibers are involved in lupus patients with these changes are still unclear.  More studies and research need to be done in order to fully understand the correlation between lupus and trigeminal neuralgia.


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3 Thoughts to “Lupus and Trigeminal Neuralgia”

  1. Shunya


    I was wondering if there was anything that relieved the trigeminal pain for you? I also have Lupus, mostly under control, and then for the past 3 years the trigeminal pain has been extreme. I have tried many meds, ablation, injections, and nothing is working. Open to any and all suggestions. Thank you for this blog ! shunya

    1. lupuslyfe

      I am so sorry to hear you are also dealing with lupus and trigeminal neuralgia. It’s awful I know. When my lupus goes out of control, my trigeinal neuralgia usually flares too. When my lupus wasnt too controlled, I was on baclofen, tegretol, and gabapentin and it was the only combo of meds that would help it from raging constantly. I am happy to say I am no longer on these meds, as my TN flares happen less often for now {thank God!], but when I have a bad lupus flare it will flare the TN. Now when I have attacks, I have received relief from a shot at the doctor that is some sort of toradol injection. I also get relief from a high taper of oral prednisone as well. I hope you get some relief soon!

  2. shunya

    Thanks for sharing this info with me Britt. I have taken those meds though not in combination. I have been getting injections of steroid and lidocaine and once had a branch ablated. I may have to go that route again- though it was quite traumatic. I will ask about the toradol.
    Happy to hear that you have found some stability. Take care!

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