Friday, March 8, 2013

Sjogren's Syndrome and Trigeminal Neuralgia

Image found here. 


Good grief. I shouldn't be surprised, EVER, by a reader telling me that her physician informed her that Sjogren's syndrome is just dry mouth and dry eyes. I've read and heard and seen this repeatedly.

But I am. I feel surprised and disappointed and somewhat cranky. Every single stinkin' time.

Case in point: A reader recently asked me if her trigeminal neuralgia pain could possibly be related to Sjogren's syndrome. She was hesitant to ask her rheumatologist since "He just thinks Sjs is dry eyes and mouth, so quit whining."

Grrr. Breathe, Julia....just breathe.

Trigeminal neuralgia, or tic douloureux (gosh I haven't seen that term for TG since the '70s) causes pain or numbness in the face, specifically in the areas which the trigeminal nerve -- also known as the fifth cranial --  innervate. It can cause a variety of symptoms, some of which are described as pain that is stabbing, electric-shock like, numbness, or burning. You can read more about TG here.

To answer the reader's question, I sent her links to several studies and reputable information sources that do indeed connect Sjogren's syndrome to this disorder as one of the many neurologic complications of Sjs:

By Julius Birnbaum, MD
Johns Hopkins Neurology-Rheumatology Clinic

"....Sjögren’s syndrome can cause 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, andpregabalin. 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 neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered."
(bolding mine)

Here's another:

Clinical Summary 
Sjogren syndrome: neurologic complications
Gustavo C Roman MD, author; Pedro J Ruiz MD, author; Raymond P Roos MD, editor.

".....Mori and colleagues reviewed 92 patients (86% women, mean age 60 years) with Sjögren syndrome and found the following varieties of neuropathy: sensory ataxia (39%); sensory painful neuropathy (20%); trigeminal neuropathy (17%); multiple mononeuropathy (12%); multiple cranial neuropathies (5%); autonomic neuropathy (3%); and radiculoneuropathy (4%) (Mori et al 2005)."(bolding mine)

Neurological Manifestations Of Sjögren's Syndrome
Steven Mandel, M.D.
Clinical Professor of Neurology
Jefferson Medical College

"Trigeminal sensory neuropathy can occur and may be characterized by progressive sensory complaints on the face. They are generally spontaneous and nonlancinating. They could start on one side and subsequently become bilateral. They may be progressive over months to years."
One could wonder why, once the diagnosis of TN is established, it would be necessary to link the cause to Sjogren's syndrome.

Here's why: Because common medications used to treat TN address the symptoms, not the cause:
It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered.
Need more? There's zillions of good, recent studies out there. So. Are there neurologic manifestations in Sjogren's syndrome including trigeminal neuralgia?


Does Sjogren's syndrome affect more than the eyes and the mouth?


It would appear that the Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center would agree, seeing as it brings together the expertise of rheumatologists, neurologists, ophthalmologists, dentists/oral surgeons, gynecologists, and otolaryngologists to treat this disease. Hm. I wonder why they would need a neurologist on staff seeing as "it's only dry mouth and dry eyes?"

Excuse me while I take out my frustration by pounding my head against the nearest wall.

::thud thud thud::


Claire Callahan Goodman said...

About 10 years ago I was suspected to have Trigeminal Neuralgia with my already-diagnosed SS. However, these symptoms are very close to those of Giant Cell Arteritis, also known as Temporal Arteritis. I was 46, and you "can't get" GCA until you are 50. However, after at least a year of pain and having to quit working, and risking blindness, I was diagnosed correctly with GCA. It's easy - in Trigeminal Neuralgia, the ESR will not be elevated. It is not an inflammatory process. In GCA, the ESR (Sed Rate) can be very elevated, up to 110 mm/ml. There is only one treatment for GCA - prednisone, in high doses. It took about 5 years for the GCA to burn itself out, but it is now gone, but I am still trying to get off prednisone. Mutter mutter.

ShEiLa said...

I almost wish that every rheumatologist could experience all of the Sjogren's symptoms for 6 months.... It would be an eye opener.

I have this type of face pain and the throat pain as well.


cargillwitch said...

interesting about the throat pain- I had been attributing mine to thrush. hmmm. Might need to re-examine this!

Gill said...

This is pretty much what I have been told, even though I have other symptoms (one of those other symptoms led me to diagnosis - a pain in the big toe! How apt.). I like the concept of certain experts suffering from Sjogren's for 6 months, most of my symptoms are mild - and long may they stay that way. I would like the oral specialist who, when I said I was worried about the return of parotitus, told me to get a life. He deserves 6 months of Sjogren's and severe, permanent, piles in my view!

Belinda said...

I was dx with SS 8 years ago, but never really had any symptoms (that I was aware of) until the past 3 years. I get a searing pain in my cheek mostly. The pain is like no other, and I always think it is a bad tooth. Recently, my new rheumy repeated all of my ANA testing and said "You do not have Sjogren's" A and B negative, while 8 years ago one or the other or both, was positive. I've been on plaquneil, Sulfasalazine, methylpred, MTX ever since. Also have RA. 4 years ago, I experienced what physician believed was vasculitis in my leg. Severe searing/burning pain. Treated and never returned. On occassion, over the past 3 to 4 years, I have experienced the facial and oral pain. A few days ago, I awoke with horrible cheek pain and a "golf ball" on my jaw. With manual pressure, heat packs, and then using a vibrating massager on my face, the swelling subsided, and I could feel a great deal of salivary "let down" with the vibrating massager. Yesterday, before I realized this was oral/facial pain and NOT dental pain, I was considering having all teeth removed thinking it would help me with pain control. Since it is NOT my teeth, this wont help. I too feel that Sjogren pain is overlooked and and often "poo pooed". Frankly, it's the most intense pain I have experienced. Once I experienced relief with the vibrating massager, I felt I needed to post just in case it may help someone else. God Bless. I've never had such incredible pain ever and I delivered two babies, have has several injuries over the years. I am a medical professional as well, and feel that when the answer is not obvious, medical peeps like to blame the patient.

Anonymous said...

My Canadian doctor, trained in South Africa said she knew about Hashimoto's thyroid and Sjogrens as well. She lied to me. I took her some articles about how SS can affect your eyes, NOSE, mouth, possibly pancreas, vagina, etc. She said and wrote on my papers "not true". The medical profession is called "pratice" cause Practice is all they do. Use of brain material not required. She refuses to refer me to the endocrinologist I had many years ago. She refuses most things.
I have now developed facial neuralgia, which apparently can be another picture of SS. Does SS ever simmer down - NO.

Jane said...

Thank you for this, Julia. My parents have always been very stoic people... my father died 18 years ago after a short illness of 5 weeks... who knows how long he had been suffering. I have often wondered if my parents had Sjogren's too... my father and my older sister always suffered terrible sinus infections, and my mother said she had a sinus operation in her teens. She is now going through TG (she doesn't know the name, but the pain she described to me fits it to a 'T'). I wonder if it is there in my future too. There is so much Sjs does to destroy quality of life. It annoys me too to no end that so many doctors minimize such terrible suffering.

Thank you.

Georgia N said...

I found this page by a search connecting Sjögren's witt trigemenal neuralgia out of curiosity to see if the bouts with TN I've experienced could be related to my Sjögren's. I was diagnosed with SS about 10 years ago, but I believe I've had it since 1992 when I was diagnosed with fibromyalgia. There are many overlapping symptoms, and my dry eyes, dry mouth, and inexplicable mouth sores were dismissed as anomalous. That was one of the multiple ill informed GPs I have had over the years.

I even had one doc tell me I couldn't have SS because I wasn't Scandinavian! I kept up the pressure, though, and he finally sent me to a rheum who put me through all the tests, including eye moisture analysis and salivary gland biopsy.

My main reason for posting a comment here is that my TN appears to be associated with those mouth sores. I didn't get the TN until just recently. The mouth sores have presented off and on over the years, but recently they have been far more massive and painful. It also turns out that there is a strong connection between oral herpes and TN. The connection may be missed because often (as with me), the sores do not appear until well into a TN attack. There is a "prodomal" stage with herpes when sores are not obvious.

I have received significant relief from antiviral medications that go after the cause and not just the symptoms of this sort of oral version of shingles. I am currently on a suppressive dose of Acyvlovir. The sores are gone, though I still have a bit of residual TN pain treated by ,an anti seizure medication.

Mouth cankers often go hand in hand with SS dry mouth, and so the potential proximate cause of a SS patient's TN can be missed. It is worth investigating, particularly if the patient has had childhood chickenpox and/or a diagnosis of genital herpes.

Unknown said...

I had excruciating facial and ear pain which emanates into my back and chest....ER drs. Act like Im nuts!! Just diagnosed with SS.... very hard one to convince the med professionals, uggghhhh

Anonymous said...

Very good info here!
I have trigeminal neuralgia for 7 years now and other symptoms are piling up. I have very dry eyes, leftt side more than right, eustachian tube dysfunction for all my life enz. Sjögren's was coming to my mind so here I am on ths site. Dry air doesn't become me.
If, and that's a big if, my trigeminal neuralgia is caused by Sjögren's, which medications is best than? Carbamazepine and gabapentine I allready use and my pain keeps coming through.

Thanks for any input and this site,

KateNZ said...

Good validation to read this article and the reader comments. I have just recently been dx with SS. I was pretty upset. I had gone for a second opinion...the rheumy was kind and considerate. Told me when I said I had never had labs show evidence of SS thst the evidence had been there for years!(fluctuating ANA and low positive Rheumatoid Factor). This answer when all my health professionals had told me no evidence there! One rheumy had told me I had a personality disorder...This shamed me into avoiding medical help for some time. I was pretty upset at finally getting a dx. I think it has taken me maybe 20 years to get one. I think a lot of damage has been done and so might not have been so bad if recognised earlier. I don't know. I am just beginning to realise that some of the things that happen like this awful face pain might be sjogrens. Thanks for this article and the reader posts.